I swear today feels like Christmas. It's so incredibly awesome to have J.J. back home. We've spent most of the day resting, catching up on our very full DVR and holding one another. And I've been reading my binder from rehab, learning how to take care of J.J. He's on seven different prescriptions which need to be administered at different times, resulting in four different times per day at which J.J. needs to be taking something. He's got four doctor appointments next week, two therapy assessments on Tuesday, an appointment with the stroke coordinator at RHI on Friday and blood tests that need to be done before week's end. I still have to track down Dr. Acula about the concern with J.J.'s meds and about his short term disability paperwork that he has had for almost a week now. The tile guy is coming out on Monday to begin the process of working on J.J.'s bathroom. None of J.J.'s clothes fit him (his pants keep falling down) so I need to remedy that very shortly. The kids will be home tomorrow. I'm about to become busier than I ever dreamed. J.J. will get grumpy and frustrated, I'll get anxious and cranky, we'll all feel the strain at some point.
But boy, am I glad to have the opportunity to deal with these issues.
In the ER the night of J.J.'s stroke, I wondered if he'd ever walk through our door again. It's nice to have removed that uncertainty. And to have to share my bed again. And to be able to kiss my husband whenever I want.
God is good.
Saturday, February 28, 2009
Home
Less than two weeks after his stroke, J.J. is home. Since neither of us has been getting much sleep, we're getting ready to take a nap. I'll post more when I wake up.
Friday, February 27, 2009
Song
As many of you know, music is a huge part of my life. Although I love to play it and sing it, I have not been blessed with the gift of composition. However, when I am going through a pivotal time in my life, I often find myself listening to one song over and over because something either in the lyrics or the instrumentation expresses what I'm feeling. I then come to associate the song with that time. My life definitely has its own soundtrack.
This is the song I've had on repeat...and the song I've sang at J.J.'s bedside a number of times in the last 12 days. I can't get over how well it fits, actually:
Love
I get so lost
Sometimes
Days pass
And this emptiness fills my heart
When I want to run away
I drive off
In my car
But whichever way I go
I come back
To the place you are
All my instincts
They return
And the grand facade
So soon will burn
Without a noise
Without my pride
I reach out
From the inside
In your eyes
The light
The heat
In your eyes
I am complete
In your eyes
I see the doorway
Of a thousand churches
In your eyes
The resolution
Of all the fruitless searches
In your eyes
Oh, I want to be that complete
I want to touch the light, the heat I see
In your eyes
Love
I don't like to see
So much pain
So much wasted
And this moment keeps slipping away
I get so tired
Of working so hard
For our survival
I look to the time with you
To keep me awake and alive
Accepting all I've done and said
I want to stand and stare again
'Til there's nothing left out, oh
It remains there in your eyes
Whatever comes and goes
I will heed your silent call
I will touch this tender wall
'Til I know I'm home again
--In Your Eyes (Peter Gabriel)
This is the song I've had on repeat...and the song I've sang at J.J.'s bedside a number of times in the last 12 days. I can't get over how well it fits, actually:
Love
I get so lost
Sometimes
Days pass
And this emptiness fills my heart
When I want to run away
I drive off
In my car
But whichever way I go
I come back
To the place you are
All my instincts
They return
And the grand facade
So soon will burn
Without a noise
Without my pride
I reach out
From the inside
In your eyes
The light
The heat
In your eyes
I am complete
In your eyes
I see the doorway
Of a thousand churches
In your eyes
The resolution
Of all the fruitless searches
In your eyes
Oh, I want to be that complete
I want to touch the light, the heat I see
In your eyes
Love
I don't like to see
So much pain
So much wasted
And this moment keeps slipping away
I get so tired
Of working so hard
For our survival
I look to the time with you
To keep me awake and alive
Accepting all I've done and said
I want to stand and stare again
'Til there's nothing left out, oh
It remains there in your eyes
Whatever comes and goes
I will heed your silent call
I will touch this tender wall
'Til I know I'm home again
--In Your Eyes (Peter Gabriel)
End of Day Post
Okay, my house hasn't been this clean since...well, since we moved in. It's all pristine all at the same time. The laundry's done, the grocery shopping's done. I've arranged for the tile to be installed in J.J.'s bathroom on Tuesday (hey, I didn't know he was only going to be in rehab for five days!).
I think I'm about as ready as I'm going to get. J.J. is scheduled for discharge at 10:00 a.m. I plan to have breakfast with him around 7:30 a.m., then wait until they decide to kick us out.
I can't wait to sleep beside my husband in our bed again.
I think I'm about as ready as I'm going to get. J.J. is scheduled for discharge at 10:00 a.m. I plan to have breakfast with him around 7:30 a.m., then wait until they decide to kick us out.
I can't wait to sleep beside my husband in our bed again.
You know you're tired when...
you fall asleep while having your eyebrows threaded. If you can sleep through someone tearing your facial hair out at the roots, there's definitely something wrong.
Oh, and thank God for the eyebrow threading place at Walmart. I can run in, be done in five minutes or less, then get on with less frivolous activity (like grocery shopping). Thanks for being there for us extreme multitaskers.
Oh, and thank God for the eyebrow threading place at Walmart. I can run in, be done in five minutes or less, then get on with less frivolous activity (like grocery shopping). Thanks for being there for us extreme multitaskers.
Tomorrow
Will be the big day. I just talked to J.J.'s neurologist (who is awesome and thus doesn't need a nickname). She feels J.J. will be fine to be at home, although she would recommend that I be home with him at all times for the first week to make sure he is safe to be alone. He will not need oxygen therapy, so I don't have to mess with that, thank goodness. He will be receiving Physical Therapy and Speech Therapy on an outpatient basis, so I need to work today to get that set up. She did have a concern with one of the medications J.J. is on, so I'm going to be following up with the cardiologist to see if it is really necessary for him to continue taking the medication. I need to schedule for J.J. to see our primary care physician, his cardiologist and Dr. Acula, unfortunately. I also will be scheduling an appointment for him to see an optometrist who specializes in vision changes after strokes.
I will obviously be very busy!
I am encouraged, though, that even Dr. Awesome Neurologist said that J.J.'s stroke was fairly mild and he should have very minimal lasting impairment. If you get the doctor to say it, you know it's true :)
Okay, I've got to go get my allergy shot and then work on all of the above stuff. My man will be home in 24 hours!
P.S. J.J.'s EKG was repeated yesterday. His ejection fraction (which had been 25%) is now 35%. Normal is 60%, but still, a 10% gain in a week seems pretty awesome.
I will obviously be very busy!
I am encouraged, though, that even Dr. Awesome Neurologist said that J.J.'s stroke was fairly mild and he should have very minimal lasting impairment. If you get the doctor to say it, you know it's true :)
Okay, I've got to go get my allergy shot and then work on all of the above stuff. My man will be home in 24 hours!
P.S. J.J.'s EKG was repeated yesterday. His ejection fraction (which had been 25%) is now 35%. Normal is 60%, but still, a 10% gain in a week seems pretty awesome.
Love
Last night's cutest moment was when Leah was playing in the kids' area with another little girl. The other little girl's mother came over to check on her daughter. Leah stood up and introduced herself, then said, "You see that wheelchair over there?" and pointed to us. "That's my dad, and he's holding hands with my mom. They have love."
She's right :)
She's right :)
Thursday, February 26, 2009
Homecomings
Today around 1:30 I was taken by surprise when I received a call from the case worker at RHI. "No emergencies," he said, "just needed to talk to you about arrangements for J.J. to come home. I don't think we're going to be able to justify keeping him inpatient much longer." I nod, thinking he'll say J.J. will probably be in the hospital for only another week or so. "Probably late Friday evening or first thing in the morning on Saturday, he will be discharged." WHAT?!? 12 days after a stroke, he'll be coming home?!? My initial split second reaction was AWESOME! Then I started thinking about it--wait, would it be safe for J.J. to be at home? And what about getting him back and forth to therapy?
As it stands now, I'm not entirely sure what will happen. I think RHI is going to try to eke another day or two out of Anthem, but it sure won't be long before J.J.'s home. Meanwhile, I'm taking that vacation day tomorrow to work on getting things set up around here for him.
More later. Must give Leah her bath and get her to bed.
As it stands now, I'm not entirely sure what will happen. I think RHI is going to try to eke another day or two out of Anthem, but it sure won't be long before J.J.'s home. Meanwhile, I'm taking that vacation day tomorrow to work on getting things set up around here for him.
More later. Must give Leah her bath and get her to bed.
Yes, I'm still out here...
I don't have much news to report but I haven't written at all today yet! If I keep this up, I'll lose my readership...
So anyway, I'm getting a lot of questions about how I'm doing. I'm incredibly exhausted and overwhelmed, but otherwise alright. I mean, I have a lot on my plate. To give you an idea, here's what yesterday looked like--and this was probably the most low-key day I've had since this all happened:
5:35: Alarm goes off. Stumble out of bed and immediately inhale Coke Zero waiting on bedside table.
5:40: Go downstairs to remove dry clothes from dryer and put wet clothes from washer into dryer. Snag a protein bar on my way back upstairs.
5:45: Check bank account. Notice J.J.'s student loan payment hasn't gone through for the month. Place call to automated system to find out why (it's paid up through April). Also notice that a service that was canceled three months ago has started auto-billing us again. Write down info, make note to call later. Respond to an email that was several days old (I'm trying to respond to all of them, but bear with me--it might take me a while!).
6:00: Take shower, put in contacts, brush teeth, etc. Blow dry hair to 80% dryness.
6:15: Make sure Eli has turned off alarm, send him downstairs to brush his teeth, feed the cat and get everything together in his backpack that he'll need for school. Listen to brief freak-out when Eli realizes that he left his homework at daycare the day before. Tell him to explain this to his teacher and see what she recommends, but to calm down since there's nothing we can do about it now.
6:30: Get Leah up. Try to put clothes on four year old who is pretending she's a cat. Do hair on four year old who is pretending she's a frog. Turn on TV to Noggin.
6:45: Apply exactly 50% of my makeup, then yell for Leah to come over to use the bathroom, wash her hands and brush her teeth. Apply rest of makeup with audience. Additionally, attempt to straighten hair (which is now completely dry) while chanting, "Hurry up, Leah. Brush your teeth, Leah. Come on, Leah". Finally get Leah finished and send her downstairs to put on her coat while I get dressed. Put on clothes, turn off Leah's TV and lights, head downstairs.
6:55: Everyone is in the car. Drive to daycare. Wish Leah would let me listen to anything other than "Accidentally in Love" by the Counting Crows (from the Shrek soundtrack), which is a fine song but which I don't need to hear 20 times per day.
7:12: At daycare. Grab cell phone from Eli, turn it off, put in his backpack and remind him not to turn it back on until I pick him up. Answer questions about J.J. Kiss children, remind them to be good, get back in car.
7:30: Arrive at work. Answer more questions about J.J. Dig in.
12:30: Look up. Holy cow! Ask coworker/friend Palak to grab Subway sandwich for me for lunch.
1:00: Eat and have brief convo with Palak. Thank her profusely.
1:30: After six hours at work, leave for the day.
1:45: Arrive at rehab. See J.J. finishing PT. Attend psych eval. Have visit with J.J. Hear names, rejoice.
3:00: Leave rehab. Run past store to buy another pair of sweatpants for J.J. Go to daycare to pick up kids. Answer more questions about J.J.
4:00: Back at rehab. J.J. still in speech therapy. Take kids down to J.J.'s room to grab his laundry. Walk back toward lobby. Find J.J. Go sit in lobby to visit for a few.
4:30: Dinner is served at rehab. Fill kids' trays. Fill my tray. Pay for everything. Sit down. Realize forgot forks. Go get forks. Sit down. Realize forgot napkins. Go get napkins. Sit down. Leah is out of drink. Go get drink. Sit down. Eli wants pepper. Go get pepper. Sit down. J.J.'s wheelchair back is leaned back too much. Adjust seat back. Sit down. Eat a small piece of fish and a couple of bites of potato. Everyone else eats well.
5:15: Kids have noticed frozen yogurt machine. Prepare yogurt sundaes, pay for the same. Sit down. Notice Leah has no napkin. Go get napkins. Sit down. Leah drops spoon. Pick up spoon, throw spoon away. Get new spoon. Sit down.
5:30: Everyone done with dinner. Go back to lobby to visit. Kids go into kids' play area. J.J. sits nearby to watch. Run out to car to get J.J.'s glasses. Fairly sure this is illegal. Jog back with tail between legs. Everyone still breathing, no one bleeding. Whew. Gather kids into coats, kiss J.J. Start toward door. Remember J.J.'s laundry which is now in bag hanging from wheelchair. Go back, find J.J., take laundry. Get everyone in car.
6:00: Head toward home to get Leah changed for swimming lessons. Pick up mail, sort into "take care of now", "can wait for later" and "how did I get on this mailing list anyway" categories. Use bathroom for first time since 10:00 a.m. Gather up four year old who is pretending she is a puppy, put her into swimsuit. Go downstairs. Remember beach towel. Go back upstairs. Come down, put kids in car and leave.
6:50: Only five minutes late for lessons this time, yay! Use lesson time to check Eli's homework and provide lecture about not texting on phone. Check Eli's phone usage. Get called in for last five minutes of swimming class. Watch Leah practice her kicks. Talk to teacher. Gather wet four year old still convinced she is puppy, take to locker room. Proceed to chase naked, wet puppy imposter and wrangle into clothes.
7:30: Leave park. Realize car needs gas. Go to gas station. Run car through car wash. Head home.
7:55: Send Eli up to shower, get laundry. Leah has been a decently behaved puppy and gets to pick one piece of leftover Valentine candy. Yell at four year old puppy-preschooler hybrid to take sucker back into kitchen roughly 58,732 times.
8:20: Bathe puppy. Put puppy into pajamas. Tuck puppy into bed.
9:00: Send Eli to bed. Update blog.
9:30: Throw in J.J.'s laundry and Leah's wet clothes from swimming class. Set up work laptop on coffee table and start it booting up. Head upstairs to work on CMAX from home computer since work computer takes so long to boot up.
10:45: Switch laundry around. Wipe off kitchen table, sweep floor. Start working on work laptop.
12:30: Finished with INHP work. Pack up. Switch laundry around. Fold Leah's clothes. Fold J.J.'s clothes. Put away clothes.
1:00: Head upstairs. Realize have forgotten phone downstairs. Retrieve phone. Take pills. Wash face, brush teeth. Read article in Psychology Today about pursuit of happiness. Turn on alarm clock. Set security system. Turn off lights.
1:30: Go to bed.
So anyway, I'm getting a lot of questions about how I'm doing. I'm incredibly exhausted and overwhelmed, but otherwise alright. I mean, I have a lot on my plate. To give you an idea, here's what yesterday looked like--and this was probably the most low-key day I've had since this all happened:
5:35: Alarm goes off. Stumble out of bed and immediately inhale Coke Zero waiting on bedside table.
5:40: Go downstairs to remove dry clothes from dryer and put wet clothes from washer into dryer. Snag a protein bar on my way back upstairs.
5:45: Check bank account. Notice J.J.'s student loan payment hasn't gone through for the month. Place call to automated system to find out why (it's paid up through April). Also notice that a service that was canceled three months ago has started auto-billing us again. Write down info, make note to call later. Respond to an email that was several days old (I'm trying to respond to all of them, but bear with me--it might take me a while!).
6:00: Take shower, put in contacts, brush teeth, etc. Blow dry hair to 80% dryness.
6:15: Make sure Eli has turned off alarm, send him downstairs to brush his teeth, feed the cat and get everything together in his backpack that he'll need for school. Listen to brief freak-out when Eli realizes that he left his homework at daycare the day before. Tell him to explain this to his teacher and see what she recommends, but to calm down since there's nothing we can do about it now.
6:30: Get Leah up. Try to put clothes on four year old who is pretending she's a cat. Do hair on four year old who is pretending she's a frog. Turn on TV to Noggin.
6:45: Apply exactly 50% of my makeup, then yell for Leah to come over to use the bathroom, wash her hands and brush her teeth. Apply rest of makeup with audience. Additionally, attempt to straighten hair (which is now completely dry) while chanting, "Hurry up, Leah. Brush your teeth, Leah. Come on, Leah". Finally get Leah finished and send her downstairs to put on her coat while I get dressed. Put on clothes, turn off Leah's TV and lights, head downstairs.
6:55: Everyone is in the car. Drive to daycare. Wish Leah would let me listen to anything other than "Accidentally in Love" by the Counting Crows (from the Shrek soundtrack), which is a fine song but which I don't need to hear 20 times per day.
7:12: At daycare. Grab cell phone from Eli, turn it off, put in his backpack and remind him not to turn it back on until I pick him up. Answer questions about J.J. Kiss children, remind them to be good, get back in car.
7:30: Arrive at work. Answer more questions about J.J. Dig in.
12:30: Look up. Holy cow! Ask coworker/friend Palak to grab Subway sandwich for me for lunch.
1:00: Eat and have brief convo with Palak. Thank her profusely.
1:30: After six hours at work, leave for the day.
1:45: Arrive at rehab. See J.J. finishing PT. Attend psych eval. Have visit with J.J. Hear names, rejoice.
3:00: Leave rehab. Run past store to buy another pair of sweatpants for J.J. Go to daycare to pick up kids. Answer more questions about J.J.
4:00: Back at rehab. J.J. still in speech therapy. Take kids down to J.J.'s room to grab his laundry. Walk back toward lobby. Find J.J. Go sit in lobby to visit for a few.
4:30: Dinner is served at rehab. Fill kids' trays. Fill my tray. Pay for everything. Sit down. Realize forgot forks. Go get forks. Sit down. Realize forgot napkins. Go get napkins. Sit down. Leah is out of drink. Go get drink. Sit down. Eli wants pepper. Go get pepper. Sit down. J.J.'s wheelchair back is leaned back too much. Adjust seat back. Sit down. Eat a small piece of fish and a couple of bites of potato. Everyone else eats well.
5:15: Kids have noticed frozen yogurt machine. Prepare yogurt sundaes, pay for the same. Sit down. Notice Leah has no napkin. Go get napkins. Sit down. Leah drops spoon. Pick up spoon, throw spoon away. Get new spoon. Sit down.
5:30: Everyone done with dinner. Go back to lobby to visit. Kids go into kids' play area. J.J. sits nearby to watch. Run out to car to get J.J.'s glasses. Fairly sure this is illegal. Jog back with tail between legs. Everyone still breathing, no one bleeding. Whew. Gather kids into coats, kiss J.J. Start toward door. Remember J.J.'s laundry which is now in bag hanging from wheelchair. Go back, find J.J., take laundry. Get everyone in car.
6:00: Head toward home to get Leah changed for swimming lessons. Pick up mail, sort into "take care of now", "can wait for later" and "how did I get on this mailing list anyway" categories. Use bathroom for first time since 10:00 a.m. Gather up four year old who is pretending she is a puppy, put her into swimsuit. Go downstairs. Remember beach towel. Go back upstairs. Come down, put kids in car and leave.
6:50: Only five minutes late for lessons this time, yay! Use lesson time to check Eli's homework and provide lecture about not texting on phone. Check Eli's phone usage. Get called in for last five minutes of swimming class. Watch Leah practice her kicks. Talk to teacher. Gather wet four year old still convinced she is puppy, take to locker room. Proceed to chase naked, wet puppy imposter and wrangle into clothes.
7:30: Leave park. Realize car needs gas. Go to gas station. Run car through car wash. Head home.
7:55: Send Eli up to shower, get laundry. Leah has been a decently behaved puppy and gets to pick one piece of leftover Valentine candy. Yell at four year old puppy-preschooler hybrid to take sucker back into kitchen roughly 58,732 times.
8:20: Bathe puppy. Put puppy into pajamas. Tuck puppy into bed.
9:00: Send Eli to bed. Update blog.
9:30: Throw in J.J.'s laundry and Leah's wet clothes from swimming class. Set up work laptop on coffee table and start it booting up. Head upstairs to work on CMAX from home computer since work computer takes so long to boot up.
10:45: Switch laundry around. Wipe off kitchen table, sweep floor. Start working on work laptop.
12:30: Finished with INHP work. Pack up. Switch laundry around. Fold Leah's clothes. Fold J.J.'s clothes. Put away clothes.
1:00: Head upstairs. Realize have forgotten phone downstairs. Retrieve phone. Take pills. Wash face, brush teeth. Read article in Psychology Today about pursuit of happiness. Turn on alarm clock. Set security system. Turn off lights.
1:30: Go to bed.
Wednesday, February 25, 2009
The sweetest sound I've ever heard...
is J.J. saying my name. He actually got the kids' names back today too. Thank you, God. I needed to hear that.
In other news, he walked 120 feet today (at one stretch, not total--that was far more) without any assistive device. He's received the okay to shower alone and is dressing himself in his super baggy pants (this happens when you lose 35 lbs. in a little over a week!) without any help. PT is working with him on fine motor activities. I still haven't observed an OT session, but I hear he's working on transferring in and out of a car and is working in the kitchen on loading/unloading the dishwasher and that sort of thing (heh, heh. How awesome is that? Many wives will be jealous of my husband's OT!). In speech therapy, along with mastering the names today, he also started doing some math and reading exercises. His voice is softer and more gravelly than before. His therapist said that J.J.'s right vocal chord seems to be paralyzed. This may very well be permanent. But you know, with all the other damage that could have been permanent that isn't, I'll take this one. I actually think it's kinda sexy :)
I also got to sit in on J.J.'s psych eval. Essentially he's well adjusted (who knew?), has a good support system and seems to be in fairly good spirits. He will be starting a low dose antidepressant simply to help to take the edge off his frustration so his therapy will be more effective--many studies have shown that stroke patients have better outcomes if they use these medications. In the words of the counselor, "There is no downside to this. Probably it will help, and if it doesn't, it won't hurt". J.J.'s new neurologist (that's right, Dr. Acula didn't follow us from the hospital!) will need to sign off on this and then he'll start getting it in the next day or two.
He's getting so conversational when we're not dealing with a therapist that it's hard to remember that a week ago the man was just nodding all of his answers. He told me today it feels like there's road construction in his brain that everything has to find a detour around. I told him that I think this is an excellent analogy--that lesion where the cell death occurred is very similar to a road block. The parts of his brain that store his knowledge, his memories, his personality weren't impacted--it's the part of his brain that hooks them up with the rest of his body that is the problem. As soon as they get around the roadblock, everything will be back. Today is the first day that in my heart of hearts, I truly believe that J.J. will have no lasting damage (well, other than that vocal chord) from the stroke.
I picked up the kids around 3:30 and we visited with J.J. until 6:00, including eating with him at rehab. He's picking right up on disciplining the kids, showing off how readily he can say Leah's name now. My favorite comment was when the rest of us had finished dinner and were waiting for Eli to finish his frozen yogurt when it was completely apparent that his eyes were bigger than his stomach and he wasn't going to be able to do so. J.J. turned to him and said, "Eli, give it up". It was such a J.J. kind of comment.
I'm now entering into the fourth phase of my day when the kids are in bed and I need to work on anything that needs to be done around here. I'm going to throw in a load of laundry and get back to my INHP work. Tomorrow's schedule will be a little different--I have several important meetings at work in the afternoon and a webinar in the morning, so I'm going to eat breakfast at rehab with J.J. in the morning, then go to work, then leave around 3:30, pick up the kids, go back to rehab for dinner and get Eli to tae kwon do. That's the plan anyway. Which means something will go terribly awry...
In other news, he walked 120 feet today (at one stretch, not total--that was far more) without any assistive device. He's received the okay to shower alone and is dressing himself in his super baggy pants (this happens when you lose 35 lbs. in a little over a week!) without any help. PT is working with him on fine motor activities. I still haven't observed an OT session, but I hear he's working on transferring in and out of a car and is working in the kitchen on loading/unloading the dishwasher and that sort of thing (heh, heh. How awesome is that? Many wives will be jealous of my husband's OT!). In speech therapy, along with mastering the names today, he also started doing some math and reading exercises. His voice is softer and more gravelly than before. His therapist said that J.J.'s right vocal chord seems to be paralyzed. This may very well be permanent. But you know, with all the other damage that could have been permanent that isn't, I'll take this one. I actually think it's kinda sexy :)
I also got to sit in on J.J.'s psych eval. Essentially he's well adjusted (who knew?), has a good support system and seems to be in fairly good spirits. He will be starting a low dose antidepressant simply to help to take the edge off his frustration so his therapy will be more effective--many studies have shown that stroke patients have better outcomes if they use these medications. In the words of the counselor, "There is no downside to this. Probably it will help, and if it doesn't, it won't hurt". J.J.'s new neurologist (that's right, Dr. Acula didn't follow us from the hospital!) will need to sign off on this and then he'll start getting it in the next day or two.
He's getting so conversational when we're not dealing with a therapist that it's hard to remember that a week ago the man was just nodding all of his answers. He told me today it feels like there's road construction in his brain that everything has to find a detour around. I told him that I think this is an excellent analogy--that lesion where the cell death occurred is very similar to a road block. The parts of his brain that store his knowledge, his memories, his personality weren't impacted--it's the part of his brain that hooks them up with the rest of his body that is the problem. As soon as they get around the roadblock, everything will be back. Today is the first day that in my heart of hearts, I truly believe that J.J. will have no lasting damage (well, other than that vocal chord) from the stroke.
I picked up the kids around 3:30 and we visited with J.J. until 6:00, including eating with him at rehab. He's picking right up on disciplining the kids, showing off how readily he can say Leah's name now. My favorite comment was when the rest of us had finished dinner and were waiting for Eli to finish his frozen yogurt when it was completely apparent that his eyes were bigger than his stomach and he wasn't going to be able to do so. J.J. turned to him and said, "Eli, give it up". It was such a J.J. kind of comment.
I'm now entering into the fourth phase of my day when the kids are in bed and I need to work on anything that needs to be done around here. I'm going to throw in a load of laundry and get back to my INHP work. Tomorrow's schedule will be a little different--I have several important meetings at work in the afternoon and a webinar in the morning, so I'm going to eat breakfast at rehab with J.J. in the morning, then go to work, then leave around 3:30, pick up the kids, go back to rehab for dinner and get Eli to tae kwon do. That's the plan anyway. Which means something will go terribly awry...
Gratitude
I have been hesitating to do this post because I KNOW I'm going to leave someone out, but I do need to acknowledge everyone who has been so good to us over the last ten days:
--My mother, who jumped in her car at 9:30 p.m. that Sunday night and made the mad dash to Indianapolis to be with my kids so I could go be with my husband--AND who then took the kids home for a week to shield them from what was happening. My kids are happy and unworried, and I know it's because of you. Thank you for also being my sounding board and cheerleader and for everything else you've done (helping me rip the carpet up in J.J.'s bathroom so I can begin the process of having it modified for him, for instance). You are the best--when I grow up someday, I hope I'm just like you.
--My father, who had a bleeding ulcer that left him five pints of blood low but who still managed to play with his grandkids all week and who even talked me through lighting my water heater pilot light from his cell phone while he was laying in a hospital bed. I know you feel guilty that you weren't able to help me with some of the stuff around the house this week, but you shouldn't at all--just take care of yourself, okay? You're always there when I need you most and you have nothing at all to feel guilty about.
--My sister, who was sick with the worst stomach flu of her life when J.J. had his stroke. Katie waited until she was sure she wasn't contagious and then jumped in with both feet, watching my kids and driving to Plainfield last Friday night to buy me dinner. You are an awesome sister, Kate.
--My mother-in-law, who still calls every evening to check in on her boy and who has managed to hold it together this far. It's not been easy, but we're going to make it through.
--J.J.'s Uncle Randy, who drove J.J.'s mom to the hospital and who even managed to find the time to relight my water heater pilot light (it's like carrying the Olympic torch, folks--everyone got involved on this one).
--Brian and Donna from R.W. Armstrong, who both visited within two hours of my calling in to RWA to report J.J.'s stroke. Heck, Brian even beat me to the hospital that day! Your concern and offers to help were much appreciated and I am so grateful to see that J.J. is so appreciated by his employer.
--J.J.'s great uncle Paul, for also checking in on us that first day in the hospital and for praying with both of us in that scary time.
--Our friend Nova, who has proven herself very worthy of being called my best friend. From the visits to the phone calls, from the shopping for a new garbage disposal with me to patting my shoulder while I cried in church on Sunday, from the casseroles to the casseroles (hey, there's a lot of them, I can't get past that!) you are the bomb diggity and I feel extremely fortunate to know you. Oh, and your husband, who was out of town for much of this mess, rocks out loud too. Mike, don't think I won't be utilizing your Anthem connections at some point to straighten out any insurance issues I have!
--Our friend Ross, who entertained J.J. by telling him dirty jokes and who has offered to be my resident "manly chores" expert...thanks for being there. I know it's been a rough year for you too--if you need me, please don't hesitate to call. We can cry on each other's shoulders, k?
--Our friend Sue, who lives on the "left coast" and who gives me someone to call in the middle of the night. Thanks for continuing to check in on us and for being there.
--My two best high school friends, Sara and Megan, for dropping everything and braving the extremely poor directions given by Mapquest to come up and keep me entertained and laughing even though you have families of your own and lots of stuff you could have been doing. Next time let's visit somewhere else, though, okay?
--My friend and coworker Katrina, who brought us the most awesome dinner on Monday night. If you ever open a restaurant, we'll so be there. You've had a lot on your plate, so the fact that you found time to do this means a lot to me. Thanks so much.
--My friend and coworker Palak, who has done everything from bringing me special aromatherapy stuff to help me sleep to making a flower arrangement for J.J.'s room to trying to organize a drive to collect money at work to purchase a gift card for us until I got wind of that and put the smack down. You are one of the kindest, most considerate people I've ever met. Thanks for being there.
--My friends and coworkers Lashonda and Brittney, who knew I was having a bad day yesterday and who came back from their lunch hour with a bouquet of flowers for me. They really do brighten my day!
--All the countless people who have sent emails, left comments, signed my Facebook wall or called me. I won't even attempt to name you because there's no way I will remember everyone. You know who you are, so please, pat yourself on the back for me!
--RWA and INHP for the beautiful planters. I'm trying to keep them alive, but if I don't succeed, please know that we still appreciate the sentiment and that will live on.
--All of my coworkers for giving me the space I need or the support I need depending on the day. I am truly blessed with an awesome work family.
--Everyone at the kids' schools. They are going to need some support too, and I thank you for loving them and helping them through this time.
--Basically everyone I've come into contact with in the last ten days. Everyone has been so wonderful, I am totally back to being a Rogerian (psych humor!). Thanks for restoring my belief in humanity.
--And although I sound like I'm giving an Academy Award speech, I'd like to thank my God, who is giving me the grace to get through this at all.
--My mother, who jumped in her car at 9:30 p.m. that Sunday night and made the mad dash to Indianapolis to be with my kids so I could go be with my husband--AND who then took the kids home for a week to shield them from what was happening. My kids are happy and unworried, and I know it's because of you. Thank you for also being my sounding board and cheerleader and for everything else you've done (helping me rip the carpet up in J.J.'s bathroom so I can begin the process of having it modified for him, for instance). You are the best--when I grow up someday, I hope I'm just like you.
--My father, who had a bleeding ulcer that left him five pints of blood low but who still managed to play with his grandkids all week and who even talked me through lighting my water heater pilot light from his cell phone while he was laying in a hospital bed. I know you feel guilty that you weren't able to help me with some of the stuff around the house this week, but you shouldn't at all--just take care of yourself, okay? You're always there when I need you most and you have nothing at all to feel guilty about.
--My sister, who was sick with the worst stomach flu of her life when J.J. had his stroke. Katie waited until she was sure she wasn't contagious and then jumped in with both feet, watching my kids and driving to Plainfield last Friday night to buy me dinner. You are an awesome sister, Kate.
--My mother-in-law, who still calls every evening to check in on her boy and who has managed to hold it together this far. It's not been easy, but we're going to make it through.
--J.J.'s Uncle Randy, who drove J.J.'s mom to the hospital and who even managed to find the time to relight my water heater pilot light (it's like carrying the Olympic torch, folks--everyone got involved on this one).
--Brian and Donna from R.W. Armstrong, who both visited within two hours of my calling in to RWA to report J.J.'s stroke. Heck, Brian even beat me to the hospital that day! Your concern and offers to help were much appreciated and I am so grateful to see that J.J. is so appreciated by his employer.
--J.J.'s great uncle Paul, for also checking in on us that first day in the hospital and for praying with both of us in that scary time.
--Our friend Nova, who has proven herself very worthy of being called my best friend. From the visits to the phone calls, from the shopping for a new garbage disposal with me to patting my shoulder while I cried in church on Sunday, from the casseroles to the casseroles (hey, there's a lot of them, I can't get past that!) you are the bomb diggity and I feel extremely fortunate to know you. Oh, and your husband, who was out of town for much of this mess, rocks out loud too. Mike, don't think I won't be utilizing your Anthem connections at some point to straighten out any insurance issues I have!
--Our friend Ross, who entertained J.J. by telling him dirty jokes and who has offered to be my resident "manly chores" expert...thanks for being there. I know it's been a rough year for you too--if you need me, please don't hesitate to call. We can cry on each other's shoulders, k?
--Our friend Sue, who lives on the "left coast" and who gives me someone to call in the middle of the night. Thanks for continuing to check in on us and for being there.
--My two best high school friends, Sara and Megan, for dropping everything and braving the extremely poor directions given by Mapquest to come up and keep me entertained and laughing even though you have families of your own and lots of stuff you could have been doing. Next time let's visit somewhere else, though, okay?
--My friend and coworker Katrina, who brought us the most awesome dinner on Monday night. If you ever open a restaurant, we'll so be there. You've had a lot on your plate, so the fact that you found time to do this means a lot to me. Thanks so much.
--My friend and coworker Palak, who has done everything from bringing me special aromatherapy stuff to help me sleep to making a flower arrangement for J.J.'s room to trying to organize a drive to collect money at work to purchase a gift card for us until I got wind of that and put the smack down. You are one of the kindest, most considerate people I've ever met. Thanks for being there.
--My friends and coworkers Lashonda and Brittney, who knew I was having a bad day yesterday and who came back from their lunch hour with a bouquet of flowers for me. They really do brighten my day!
--All the countless people who have sent emails, left comments, signed my Facebook wall or called me. I won't even attempt to name you because there's no way I will remember everyone. You know who you are, so please, pat yourself on the back for me!
--RWA and INHP for the beautiful planters. I'm trying to keep them alive, but if I don't succeed, please know that we still appreciate the sentiment and that will live on.
--All of my coworkers for giving me the space I need or the support I need depending on the day. I am truly blessed with an awesome work family.
--Everyone at the kids' schools. They are going to need some support too, and I thank you for loving them and helping them through this time.
--Basically everyone I've come into contact with in the last ten days. Everyone has been so wonderful, I am totally back to being a Rogerian (psych humor!). Thanks for restoring my belief in humanity.
--And although I sound like I'm giving an Academy Award speech, I'd like to thank my God, who is giving me the grace to get through this at all.
One of my favorite things about the morning...
I don't have to immediately get up and light the pilot on the water heater now. The plumber replaced the thermocouple (?) and the control panel; it was a quick and relatively cheap repair and seems to have done the trick.
One more home improvement project crossed off of J.J.'s honey-do list.
One more home improvement project crossed off of J.J.'s honey-do list.
Tuesday, February 24, 2009
End of Day Post
Boy, do I feel like I've been on an emotional rollercoaster today. As you know, I had a pretty tough morning. More than anything, I think the lack of sleep is catching up to me. I have some significant meetings (not that any of my meetings are insignificant--I just mean that they would be difficult to reschedule) at work for the next two days, but I'm toying with the idea of using a vacation day for Friday so I can get some rest. This working after the kids go to bed thing is pretty difficult right now because I am so sleep deprived. I think once I get caught up a little it will be more manageable.
J.J. had four and a half hours of therapy today. These included a physical therapy assessment, an occupational therapy assessment, a speech therapy session, a physical therapy session and an optical therapy assessment. J.J.'s vision prescription has changed a little since his stroke. Due to his blindness (J.J. was born without a retina in his right eye and is blind on this side), his depth perception was an adaptation. The change in his vision has thrown his depth perception out of whack. The result is that he keeps running into things on his right because he misjudges how much room there is. Optical therapy should help with this.
Let's see--as far as physical therapy, J.J. is doing very well. He's using a wheelchair at the moment until the doctor signs off on his PT assessment, which recommends a cane for balance only. J.J. is really irritated by this chair; granted, it is rather irritating. It looks like a throne. J.J. weighs 20 lbs. over the cut off weight for the standard adult wheelchairs, and this one looks to be made for someone about twice his size. It's ridiculous. We should be bidding it adieu very shortly. His right hand has regained a lot of the gross motor function--he's able to eat with his right hand again--but still has a little bit of fine motor control to work out. I brought my laptop in for him today and he gave up on it quickly since he can't type accurately yet.
I missed the OT assessment so I can't really speak to that one. Hopefully I can catch that one tomorrow. Speech therapy was interesting--J.J.'s speech is really coming a long way but remains his number one issue. It wasn't surprising to learn that J.J.'s speech is better if he is reading a passage aloud or if he has a picture to refer to, since he's such a bookworm. His concentration is getting better as well. A lot of the automatic speech is coming back (i.e., counting, days of the week, his full name, etc.). He still hasn't said my name or the kids' names, but we set that as a goal with the therapist and J.J. will be working toward that in the next day or two. He will receive 1-2 hours of speech therapy each day, seven days per week, for the foreseeable future.
Although I am thrilled that J.J.'s speech is improving, I am not thrilled that as soon as we got back to his room this afternoon on a break between therapy sessions he started pleading with me to take him home. His argument is that the speech therapy can be done outpatient and he will be more comfortable and thus more focused if he is at home with us. My argument is that RHI is among the most well-respected rehabilitation facilities in the Midwest and that there are people who have been on their waiting list for years. J.J. was lucky that they happened to have a bed open for him at this time. Additionally, the three week period following a stroke is the time of most rapid recovery; I think by remaining inpatient during this time, he will maximize the extent of his recovery. I won, of course, but I felt really terrible telling him I wouldn't bring him home. I don't think he'll be there long anyway--at this point Anthem is only certing him for five days at a time, so I anticipate we're probably looking at somewhere between 10-20 days.
The rest of my day has been okay, if tiring. Leah has been a gigantic pill the last couple of days. I think her acting out is correlated with her dad's hospitalization. But she'd going to need to lay off, or Mommy will be eating Xanax for dinner each evening.
The first physical sign of my stress/malnutrition (except the white hair, which was pretty long so I think it dates back some time) has shown up. My fingernails are breaking at an alarming rate. I'm cutting them all off now, which bothers me since I've always had long nails and am rather vain about my hands, but oh well. One less thing to have to deal with right now.
Okay, time to get back for my last two INHP hours of the day. More tomorrow.
J.J. had four and a half hours of therapy today. These included a physical therapy assessment, an occupational therapy assessment, a speech therapy session, a physical therapy session and an optical therapy assessment. J.J.'s vision prescription has changed a little since his stroke. Due to his blindness (J.J. was born without a retina in his right eye and is blind on this side), his depth perception was an adaptation. The change in his vision has thrown his depth perception out of whack. The result is that he keeps running into things on his right because he misjudges how much room there is. Optical therapy should help with this.
Let's see--as far as physical therapy, J.J. is doing very well. He's using a wheelchair at the moment until the doctor signs off on his PT assessment, which recommends a cane for balance only. J.J. is really irritated by this chair; granted, it is rather irritating. It looks like a throne. J.J. weighs 20 lbs. over the cut off weight for the standard adult wheelchairs, and this one looks to be made for someone about twice his size. It's ridiculous. We should be bidding it adieu very shortly. His right hand has regained a lot of the gross motor function--he's able to eat with his right hand again--but still has a little bit of fine motor control to work out. I brought my laptop in for him today and he gave up on it quickly since he can't type accurately yet.
I missed the OT assessment so I can't really speak to that one. Hopefully I can catch that one tomorrow. Speech therapy was interesting--J.J.'s speech is really coming a long way but remains his number one issue. It wasn't surprising to learn that J.J.'s speech is better if he is reading a passage aloud or if he has a picture to refer to, since he's such a bookworm. His concentration is getting better as well. A lot of the automatic speech is coming back (i.e., counting, days of the week, his full name, etc.). He still hasn't said my name or the kids' names, but we set that as a goal with the therapist and J.J. will be working toward that in the next day or two. He will receive 1-2 hours of speech therapy each day, seven days per week, for the foreseeable future.
Although I am thrilled that J.J.'s speech is improving, I am not thrilled that as soon as we got back to his room this afternoon on a break between therapy sessions he started pleading with me to take him home. His argument is that the speech therapy can be done outpatient and he will be more comfortable and thus more focused if he is at home with us. My argument is that RHI is among the most well-respected rehabilitation facilities in the Midwest and that there are people who have been on their waiting list for years. J.J. was lucky that they happened to have a bed open for him at this time. Additionally, the three week period following a stroke is the time of most rapid recovery; I think by remaining inpatient during this time, he will maximize the extent of his recovery. I won, of course, but I felt really terrible telling him I wouldn't bring him home. I don't think he'll be there long anyway--at this point Anthem is only certing him for five days at a time, so I anticipate we're probably looking at somewhere between 10-20 days.
The rest of my day has been okay, if tiring. Leah has been a gigantic pill the last couple of days. I think her acting out is correlated with her dad's hospitalization. But she'd going to need to lay off, or Mommy will be eating Xanax for dinner each evening.
The first physical sign of my stress/malnutrition (except the white hair, which was pretty long so I think it dates back some time) has shown up. My fingernails are breaking at an alarming rate. I'm cutting them all off now, which bothers me since I've always had long nails and am rather vain about my hands, but oh well. One less thing to have to deal with right now.
Okay, time to get back for my last two INHP hours of the day. More tomorrow.
Nothing's Wrong...
If you see me today and notice my bloodshot eyes and streaked makeup, don't think anything is wrong with J.J. (well, nothing new, anyway). I'm just having a bad day. I'm overwhelmed and really want to be able to discuss it with my husband without resorting to Charades. I want to hear him say my name, our kids' names, his name--hell, much of anything. I'm not picky.
This is harder than I ever would have imagined.
This is harder than I ever would have imagined.
Morning
And another morning has come. Today will be another busy day. On the agenda--five hours of work in the office (kinda--I've got a meeting out of the office for three hours this morning). To rehab by 1:00. Participation in J.J.'s therapy for the day. Pick up the kids by 3:30. Eat dinner with J.J. in rehab cafeteria. Eli's drum lesson at 6:00. Home, homework, baths, kids to bed. Laundry, cleaning, pay bills, finish other three hours owed to INHP. Bed? Then up to do it all again.
Sigh. No wonder my days are running together.
Sigh. No wonder my days are running together.
Monday, February 23, 2009
Tonight's Prayer
I honestly believe that almost everything that goes through my head these days truly is a prayer, even if it consists of only one word. I haven't taken the time to write any down, but tonight, I'm hoping it will bring me peace...
My Lord,
I enter into Your presence this evening to thank You for the blessings I've found in this day. Thank You for keeping my family safe through another day. Thank You for allowing the minds of my children to be unburdened with worry. Thank You for continuing to bestow Your healing on the body of my husband. Thank You for the many caring friends and family members You've brought into my life.
As You created me, You know me best, Lord. You know that I need Your strength to continue to wash over me. You know that I need to continue to not strive for understanding, but for the peace to know that there are reasons for everything that happens in Your world, whether I comprehend them or not. Please grant me the patience to remember that just because I don't see an immediate answer to my prayer doesn't mean that You have not heard me.
Please continue to hold my husband, my family and myself in Your arms, and watch over us as this day ends and tomorrow begins. May I use it as well as I can to bring You glory in my words and deeds.
These things I ask in the name of Your son, my Savior;
Amen.
My Lord,
I enter into Your presence this evening to thank You for the blessings I've found in this day. Thank You for keeping my family safe through another day. Thank You for allowing the minds of my children to be unburdened with worry. Thank You for continuing to bestow Your healing on the body of my husband. Thank You for the many caring friends and family members You've brought into my life.
As You created me, You know me best, Lord. You know that I need Your strength to continue to wash over me. You know that I need to continue to not strive for understanding, but for the peace to know that there are reasons for everything that happens in Your world, whether I comprehend them or not. Please grant me the patience to remember that just because I don't see an immediate answer to my prayer doesn't mean that You have not heard me.
Please continue to hold my husband, my family and myself in Your arms, and watch over us as this day ends and tomorrow begins. May I use it as well as I can to bring You glory in my words and deeds.
These things I ask in the name of Your son, my Savior;
Amen.
Down
I just finished filling out J.J.'s Short Term Disability paperwork. All over it are questions regarding J.J.'s expected return to work date. All I'm thinking is, hey, paperwork, nobody wants to know when things will be back to normal around here more than I do. But anyway, it's all very real now.
I also received the first claim paperwork from our insurance company today. So far nothing is wrong but I have faith in Anthem that something will be screwed up soon that I will get to figure out.
I can't believe that nine days ago I had no clue any of this would be happening. If I had known, I would have spent the whole day last Sunday kissing that man while he could still really kiss me back.
He's got to recover. He just has to. Twelve years of the life we built together just isn't enough.
The kids are in bed. I still owe INHP another two hours of work. Nothing says I have to be dry-eyed while doing it though, right?
I also received the first claim paperwork from our insurance company today. So far nothing is wrong but I have faith in Anthem that something will be screwed up soon that I will get to figure out.
I can't believe that nine days ago I had no clue any of this would be happening. If I had known, I would have spent the whole day last Sunday kissing that man while he could still really kiss me back.
He's got to recover. He just has to. Twelve years of the life we built together just isn't enough.
The kids are in bed. I still owe INHP another two hours of work. Nothing says I have to be dry-eyed while doing it though, right?
My husband is NOT in the hospital!
I had a whole post typed out and Blogger ate it. Darn it. Oh well...
Anyway, I know it's still a medical facility, but having J.J. in rehab feels like we've taken a giant step toward getting him well. He came in around 1:30 and has been working on getting settled in. He was able to walk from the gurney to his bed; no limp, nothing. He's getting some real street clothes on for the first time and having his therapy assessments this afternoon. And he looks awesome. I'm afraid the sweats I bought for him to wear while he's in rehab will be too big, though--he's lost a little over 30 lbs. this week, between several days of NPO and the Lasix.
He does have a roommate, a 77 year old man recovering from a stroke and quadruple heart bypass. He seems like a nice guy--we visited for a while before J.J. got to rehab. He said he enjoys having kids around, so hopefully we won't drive him crazy.
Plumber just got to the house. We'll see what we can find out about this water heater, then I'm going to pick up the kids and get them over to see their dad. Then Leah's first swimming lesson is tonight--it's going to be a busy day!
Anyway, I know it's still a medical facility, but having J.J. in rehab feels like we've taken a giant step toward getting him well. He came in around 1:30 and has been working on getting settled in. He was able to walk from the gurney to his bed; no limp, nothing. He's getting some real street clothes on for the first time and having his therapy assessments this afternoon. And he looks awesome. I'm afraid the sweats I bought for him to wear while he's in rehab will be too big, though--he's lost a little over 30 lbs. this week, between several days of NPO and the Lasix.
He does have a roommate, a 77 year old man recovering from a stroke and quadruple heart bypass. He seems like a nice guy--we visited for a while before J.J. got to rehab. He said he enjoys having kids around, so hopefully we won't drive him crazy.
Plumber just got to the house. We'll see what we can find out about this water heater, then I'm going to pick up the kids and get them over to see their dad. Then Leah's first swimming lesson is tonight--it's going to be a busy day!
They Tried to Make Him Go To Rehab...
and we didn't say no, no, no :) My apologies to Amy Winehouse.
At 1:15 J.J. will be admitted at RHI. This is where the real work starts. And where I have to be careful about who I utter the sentence, "My husband is in rehab" to. Wouldn't want him to go back to work to find AA literature in his mailbox or anything.
At 1:15 J.J. will be admitted at RHI. This is where the real work starts. And where I have to be careful about who I utter the sentence, "My husband is in rehab" to. Wouldn't want him to go back to work to find AA literature in his mailbox or anything.
Sunday, February 22, 2009
End of Day Wrap Up
I just got Eli to bed (Leah's been in bed for 45 minutes or so), thus ending my first day of single motherhood. It's so awesome to be able to give my babies a snuggle when I want, although everything just got about ten times harder. And oh, the look on J.J.'s face when he saw them! They both catapulted into his bed and just cuddled with him for a good long while. Both the kids seemed to handle seeing J.J. pretty well and I think it helped settle some of their concerns.
Eli has started asking questions. Chief among his concerns right now is why J.J.'s stroke happened, why it happened while he was so young and how we know it won't happen again. I explained that we may never know why, that sometimes young people do have strokes and that often they recover to lead full, healthy lives. I let him know that we're really hopeful that Daddy will be able to get back to normal after he does lots of hard work with rehab and therapy sessions even after he comes home. I also let him know that his dad will be on medicine to help him reduce his chances of having a stroke in the future and that we'll be on the lookout for symptoms to help to keep it from happening again. He seems puzzled but satisfied. Eli's always been a very concrete thinker and I think the knowledge that strokes are something that usually happens in older people is very hard for him to reconcile with J.J.'s age.
In other news, I had to throw some big gigantic fits today about the fact that J.J.'s x-rays and ultrasound from yesterday still had not been read as of 5:00 this evening. Finally I got Dr. Acula to grace me with a personal call explaining the situation and what is going to be done to fix this. J.J. does have cellulitis in his right foot/leg. This will be treated with antibiotics and should be much better within the next few days. It will not keep him from being transferred to RHI. After his sleep study is completed this evening, we should be good to go. I'm soooo ready to get him out of the hospital and to the next stop on the road to being home with us.
I have so much more to say but no time to sit and write. I have three loads of laundry to fold, a bathroom to clean, a lasagna to heat up (thanks Nova!), bags to pack and a vague notion that I should probably try to get some sleep. More tomorrow, hopefully from rehab.
P.S. I just realized it's now been one week, almost to the minute, since J.J. was loaded into the ambulance. I can't believe it's already been that long. I can't believe it's only been that long.
Eli has started asking questions. Chief among his concerns right now is why J.J.'s stroke happened, why it happened while he was so young and how we know it won't happen again. I explained that we may never know why, that sometimes young people do have strokes and that often they recover to lead full, healthy lives. I let him know that we're really hopeful that Daddy will be able to get back to normal after he does lots of hard work with rehab and therapy sessions even after he comes home. I also let him know that his dad will be on medicine to help him reduce his chances of having a stroke in the future and that we'll be on the lookout for symptoms to help to keep it from happening again. He seems puzzled but satisfied. Eli's always been a very concrete thinker and I think the knowledge that strokes are something that usually happens in older people is very hard for him to reconcile with J.J.'s age.
In other news, I had to throw some big gigantic fits today about the fact that J.J.'s x-rays and ultrasound from yesterday still had not been read as of 5:00 this evening. Finally I got Dr. Acula to grace me with a personal call explaining the situation and what is going to be done to fix this. J.J. does have cellulitis in his right foot/leg. This will be treated with antibiotics and should be much better within the next few days. It will not keep him from being transferred to RHI. After his sleep study is completed this evening, we should be good to go. I'm soooo ready to get him out of the hospital and to the next stop on the road to being home with us.
I have so much more to say but no time to sit and write. I have three loads of laundry to fold, a bathroom to clean, a lasagna to heat up (thanks Nova!), bags to pack and a vague notion that I should probably try to get some sleep. More tomorrow, hopefully from rehab.
P.S. I just realized it's now been one week, almost to the minute, since J.J. was loaded into the ambulance. I can't believe it's already been that long. I can't believe it's only been that long.
In a little over an hour...
I will begin my stint as a single mom. I'm so excited to see my kids again, but nervous about how this is going to work out.
Wish me luck.
Wish me luck.
Comments
I finally took the time to figure out how to enable anonymous comments! For all of you who have wanted to post but didn't have the time or desire to create a blogger account, you can now post away. I am moderating some comments on some posts, so if your post doesn't show up right away, that's why.
Hope to hear from you soon!
Hope to hear from you soon!
Saturday, February 21, 2009
End of Day Post
The longer I watch J.J. endure what's happening to him, the more I am irritated about the fact that anyone has to go through this. This stroke has stripped away every last shred of dignity from my proud, stubborn, self-sufficient husband.
Another thing that bothers me (and why I spend so much time at the hospital) is that J.J. is viewed by the medical personnel as only another stroke patient. No one cares that his favorite color is midnight blue, that he puts Tabasco on almost everything he eats, that he lovingly refers to his children as "Chaos" and "Havoc" (it doesn't sound loving, but it is), that even after we've been married all these years, he still occasionally proposes to me; that he is an excellent cook, a stern but fair disciplinarian and the "fun parent" in this house. The nurse who has been caring for him for the last three days is still calling him Jay, and J.J. can't even correct her because for some reason proper nouns (like names) have been lagging in his speech. I have family pictures hung all over the boards in J.J.'s room, because I want everyone to see him as I know him and to see the beautiful, hectic, crazy life he has that he needs to return to.
I know I keep saying that J.J.'s speech is getting better. He's expressing far more complex thoughts now and is rarely content with giving just a yes/no answer. His speech is not slurred at all anymore and although it's slow since he has to find the words, his voice sounds just like it always has. His eyes are back to tracking together. His smile is straight again. When he smiles, he has crinkles around both of his eyes (the muscles on the right side of his face had been slack before). He ate dinner tonight solely with his right hand to prove to himself that he could (although he ate with a spoon to keep from dropping everything). If we could just figure out what's wrong with his right foot, I don't think he'd even need that walker. His tests should be read first thing in the morning, so hopefully we'll know what's wrong then and will be able to start treating it right away.
Eli and Leah will be home tomorrow and after church we will be going to visit their dad. Please send thoughts/prayers that this goes well. J.J. looks exactly like he did last week (well, about ten pounds lighter and in a hospital bed, but that's about all the change) so I think that will reassure the kids.
Time to go do my evening chores, force down something for dinner and get to bed. See you tomorrow!
Another thing that bothers me (and why I spend so much time at the hospital) is that J.J. is viewed by the medical personnel as only another stroke patient. No one cares that his favorite color is midnight blue, that he puts Tabasco on almost everything he eats, that he lovingly refers to his children as "Chaos" and "Havoc" (it doesn't sound loving, but it is), that even after we've been married all these years, he still occasionally proposes to me; that he is an excellent cook, a stern but fair disciplinarian and the "fun parent" in this house. The nurse who has been caring for him for the last three days is still calling him Jay, and J.J. can't even correct her because for some reason proper nouns (like names) have been lagging in his speech. I have family pictures hung all over the boards in J.J.'s room, because I want everyone to see him as I know him and to see the beautiful, hectic, crazy life he has that he needs to return to.
I know I keep saying that J.J.'s speech is getting better. He's expressing far more complex thoughts now and is rarely content with giving just a yes/no answer. His speech is not slurred at all anymore and although it's slow since he has to find the words, his voice sounds just like it always has. His eyes are back to tracking together. His smile is straight again. When he smiles, he has crinkles around both of his eyes (the muscles on the right side of his face had been slack before). He ate dinner tonight solely with his right hand to prove to himself that he could (although he ate with a spoon to keep from dropping everything). If we could just figure out what's wrong with his right foot, I don't think he'd even need that walker. His tests should be read first thing in the morning, so hopefully we'll know what's wrong then and will be able to start treating it right away.
Eli and Leah will be home tomorrow and after church we will be going to visit their dad. Please send thoughts/prayers that this goes well. J.J. looks exactly like he did last week (well, about ten pounds lighter and in a hospital bed, but that's about all the change) so I think that will reassure the kids.
Time to go do my evening chores, force down something for dinner and get to bed. See you tomorrow!
No Move Today
J.J.'s right foot is bothering him, so he's going to have an x-ray and an ultrasound this afternoon. Dr. Acula thinks it's either a stress fracture or cellulitis. Either way, they'll treat him before they street him. They also have scheduled J.J. to have a sleep study tomorrow night (good luck with that--he's not really sleeping much at all) so it'll be Monday before he's moved.
He's in pretty good spirits today and the language is coming better and better all the time. His right hand control is almost fully back and his strength is getting much better as well. At this point, if they don't hurry it on up, we may not even need that rehab.
I'm at home now since J.J. was going to be down in radiology for a while. I'm going to examine the inside of my eyelids for a while before going back to see what Dr. Acula has to say. As soon as I know more you will too.
He's in pretty good spirits today and the language is coming better and better all the time. His right hand control is almost fully back and his strength is getting much better as well. At this point, if they don't hurry it on up, we may not even need that rehab.
I'm at home now since J.J. was going to be down in radiology for a while. I'm going to examine the inside of my eyelids for a while before going back to see what Dr. Acula has to say. As soon as I know more you will too.
Just found....
my first white hair. Right at my right temple.
Thank you life. Way to kick me while I'm down.
Thank you life. Way to kick me while I'm down.
Sad Milestone
This is now officially the longest I've slept away from J.J. since we got married.
And yes, I did decide to change the sheets. I figure it's not going to get any easier and I can't just sleep on the same sheets until he comes home (EW!)
I've spent a large portion of the morning (well, all except the 2.5 hours I slept) cleaning, doing laundry and getting J.J. packed for rehab. I even loaded six bags of toys, clothes and household stuff into my car to drop by the Goodwill on the way to the hospital. I think all this organization and cleaning is my way of trying to keep my mind occupied at night. But whatever, my house is looking pretty darn good. Next, I'll get the motivation to tackle J.J.'s computer desk. The man is such a packrat!
I'll update today after the big move. Keep your fingers crossed that all goes well and we get him settled with a minimum of hassle.
And yes, I did decide to change the sheets. I figure it's not going to get any easier and I can't just sleep on the same sheets until he comes home (EW!)
I've spent a large portion of the morning (well, all except the 2.5 hours I slept) cleaning, doing laundry and getting J.J. packed for rehab. I even loaded six bags of toys, clothes and household stuff into my car to drop by the Goodwill on the way to the hospital. I think all this organization and cleaning is my way of trying to keep my mind occupied at night. But whatever, my house is looking pretty darn good. Next, I'll get the motivation to tackle J.J.'s computer desk. The man is such a packrat!
I'll update today after the big move. Keep your fingers crossed that all goes well and we get him settled with a minimum of hassle.
While Cleaning...
Found the card J.J. gave me for Valentines Day last year. "Love you now, forever and always" is the way it's signed.
I needed to see that tonight. Even if it did end my "no crying" streak.
I needed to see that tonight. Even if it did end my "no crying" streak.
Friday, February 20, 2009
End of Day Wrap Up
Okay, so J.J. will be moving to the rehab place sometime tomorrow afternoon (RHI will be ready for him anytime after 3:00 p.m.). I've spent most of the evening running around getting stuff together to pack him for rehab--I swear I look like I'm getting a kid ready for summer camp. I also have finally hit the wall in terms of my energy level. I realized shortly after I left the hospital that I forgot to help J.J. order breakfast for tomorrow, and I won't be there until 12:00 or so (I just called and talked to the unit secretary, so we should be covered). And as soon as I got home from Walmart, I realized I left a case of soda under the cart. I can't muster the requisite level of caring to call on this. It's worth the $6.50 not to mess with it in my book.
My sister came up to Plainfield this evening and met me for dinner. This is the first real meal I've eaten since...well, since dinner Sunday night. Katie has a dry, sarcastic wit that is unparelleled, especially when you are seriously on the edge due to lack of sleep anyway. It was nice to get my mind off things for a while.
J.J. is doing better again today, although he was really wiped out by the time I saw him this afternoon. Physical therapy had him up and walking on his walker for much of the afternoon. He is having some problems with it because he has a little bit of contracture at the back of his right heel that's making it hard to put his foot flat on the floor. His right arm control is getting way better. Lifting it over his head is effortless again. His speech is getting better as well. We even worked on some of his speech exercises while I was there tonight. He did better for me than he ever has for the therapists. Some might argue that this is because more time has passed, but I choose to think of it as love making all the difference.
Going back to work today was really odd. On the one hand, it feels really weird to get back to a world that has kept moving without us. But, I felt more in control during those four hours than I have anywhere else all week. I am also strangely proud to say that I haven't cried today. I'm not sure if this is a good sign (I feel kind of emotionally blunted and numb, which can't be good either) but it has been easier on my makeup.
I'm off to clean the master bedroom tonight (I'm breaking everything up into zones and doing a little every night). I'm debating whether or not to change my sheets. I changed them last on Saturday, which means they are really due, since I'm a stickler about my bedding being really clean. But if I change them, J.J. won't have slept with me on the new sheets.
I'll let you know what I decide.
Oh, one more major item--in no more than 36 hours (and maybe less if J.J. is moved early enough tomorrow), my babies will be home. I've missed them like crazy. And yes, we'll be visiting their dad in his new digs on Sunday afternoon.
My sister came up to Plainfield this evening and met me for dinner. This is the first real meal I've eaten since...well, since dinner Sunday night. Katie has a dry, sarcastic wit that is unparelleled, especially when you are seriously on the edge due to lack of sleep anyway. It was nice to get my mind off things for a while.
J.J. is doing better again today, although he was really wiped out by the time I saw him this afternoon. Physical therapy had him up and walking on his walker for much of the afternoon. He is having some problems with it because he has a little bit of contracture at the back of his right heel that's making it hard to put his foot flat on the floor. His right arm control is getting way better. Lifting it over his head is effortless again. His speech is getting better as well. We even worked on some of his speech exercises while I was there tonight. He did better for me than he ever has for the therapists. Some might argue that this is because more time has passed, but I choose to think of it as love making all the difference.
Going back to work today was really odd. On the one hand, it feels really weird to get back to a world that has kept moving without us. But, I felt more in control during those four hours than I have anywhere else all week. I am also strangely proud to say that I haven't cried today. I'm not sure if this is a good sign (I feel kind of emotionally blunted and numb, which can't be good either) but it has been easier on my makeup.
I'm off to clean the master bedroom tonight (I'm breaking everything up into zones and doing a little every night). I'm debating whether or not to change my sheets. I changed them last on Saturday, which means they are really due, since I'm a stickler about my bedding being really clean. But if I change them, J.J. won't have slept with me on the new sheets.
I'll let you know what I decide.
Oh, one more major item--in no more than 36 hours (and maybe less if J.J. is moved early enough tomorrow), my babies will be home. I've missed them like crazy. And yes, we'll be visiting their dad in his new digs on Sunday afternoon.
Quick Update
I ran home from the hospital thinking that my water heater was going to be worked on only to find out it's not going to work out for today after all. Oh well--now that I know how to light it, I can keep it limping along through the weekend.
But the big news from the hospital (I was there for only about ten minutes before I had to rush out); I think they might be releasing J.J. either later tonight or first thing in the morning! It'll be nice to get him into rehab and on the road to recovery.
Okay, I'm back off to the hospital. I'll report back in as soon as I know more.
But the big news from the hospital (I was there for only about ten minutes before I had to rush out); I think they might be releasing J.J. either later tonight or first thing in the morning! It'll be nice to get him into rehab and on the road to recovery.
Okay, I'm back off to the hospital. I'll report back in as soon as I know more.
What Not to Say
As I'm starting to reenter the real world, I'd like to give you some suggestions on how not to interact with me. Please do not use any of the following phrases...
Boy, you've had a bad week--No, I haven't. My week has been long, annoying, frustrating and tiring. But J.J. could have died on that stairway in front of his kids, and he didn't. His impairments could have been much more severe, and they aren't. He could have a much more dismal prognosis, but he doesn't. I have not had a bad week.
You may have to redefine normal for a while--the next person to say this to me is going to need to redefine my fist in their face. I know exactly what normal is. If it has to be redefined, it's not normal. If I decide to call my cat a dog, it doesn't make him one. Words have specific meanings, and I am not now nor will I ever be Merriam or Webster, so I can't change them.
How's Jim--I know this one's an honest mistake. But my husband is J.J., or James. Or a few other names I have for him that I won't get into. But none of them is Jim.
Are you eating--unless you carried me inside your body, you need to stop hassling me about food. I feel like I'm going to puke about 99 percent of the time. I'm aware that I need to force myself to eat and am doing so on a regular basis, even if it's not as much or as often as I did last week. These bones have plenty of meat on them anyway. I'm not going to starve today, or tomorrow either.
See above, but substitute sleep--I'm only sleeping when I drop from exhaustion. Sleep is not one of my better things anyway; I've been an insomniac since my teenage years at least. I'm working on it but short of conking myself over the head with a rubber mallet, I'm not sure what else I can do.
And the worst one of all--saying nothing. Don't think I'm going to fall apart on you. But my life changed irrevocaably 108 hours ago, and failing to acknowledge this makes me feel like you don't care. Tell me you're sorry and that we're in your thoughts and prayers. Let me know you'll listen when I'm ready to talk. Don't be afraid to joke with me or around me. And for the very last time--STOP TREATING ME LIKE I'M SPECIAL. If you were in my shoes, you'd be doing exactly the same things I'm doing.
Now I'm tired of typing this out on my phone, so that's all for now. Hope this helps!
Boy, you've had a bad week--No, I haven't. My week has been long, annoying, frustrating and tiring. But J.J. could have died on that stairway in front of his kids, and he didn't. His impairments could have been much more severe, and they aren't. He could have a much more dismal prognosis, but he doesn't. I have not had a bad week.
You may have to redefine normal for a while--the next person to say this to me is going to need to redefine my fist in their face. I know exactly what normal is. If it has to be redefined, it's not normal. If I decide to call my cat a dog, it doesn't make him one. Words have specific meanings, and I am not now nor will I ever be Merriam or Webster, so I can't change them.
How's Jim--I know this one's an honest mistake. But my husband is J.J., or James. Or a few other names I have for him that I won't get into. But none of them is Jim.
Are you eating--unless you carried me inside your body, you need to stop hassling me about food. I feel like I'm going to puke about 99 percent of the time. I'm aware that I need to force myself to eat and am doing so on a regular basis, even if it's not as much or as often as I did last week. These bones have plenty of meat on them anyway. I'm not going to starve today, or tomorrow either.
See above, but substitute sleep--I'm only sleeping when I drop from exhaustion. Sleep is not one of my better things anyway; I've been an insomniac since my teenage years at least. I'm working on it but short of conking myself over the head with a rubber mallet, I'm not sure what else I can do.
And the worst one of all--saying nothing. Don't think I'm going to fall apart on you. But my life changed irrevocaably 108 hours ago, and failing to acknowledge this makes me feel like you don't care. Tell me you're sorry and that we're in your thoughts and prayers. Let me know you'll listen when I'm ready to talk. Don't be afraid to joke with me or around me. And for the very last time--STOP TREATING ME LIKE I'M SPECIAL. If you were in my shoes, you'd be doing exactly the same things I'm doing.
Now I'm tired of typing this out on my phone, so that's all for now. Hope this helps!
I May Be Dense...
but even I know something's wrong with the water heater--the pilot is out again, but it must have been fairly recent since my shower was tepid instead of icy. Just what I need today, dealing with yet another repair. Couldn't it at least be in the part of the house that's sparkling clean from the last one? And does anyone know what breed of repairperson I need for this one? Plumber? Heating and Air?
And why is our house, which is only six years old, choosing this time to fall apart?
Sheesh. I'd better win wife of the year.
And why is our house, which is only six years old, choosing this time to fall apart?
Sheesh. I'd better win wife of the year.
Morning Observations
1. I have a carpet burn on my knee that I can only assume I sustained while working on the water heater last night. Thank goodness that it's too cold for shorts--I might have some explaining to do. J.J.'s not the jealous type, though, so maybe not...
2. My sleep was terrible again last night. I think I got about four hours, but it was all broken up. I've figured out what the biggest problem is--I'm used to hearing J.J. snore and feeling him move around. It's waking me up not to have that going on.
3. I'm getting ready to go shower and get going on this "returning to work" adventure. Please, don't judge me for leaving my husband in the hospital while I work--I just know I'm going to need my time off when he comes home, so for now, I'm going to try to miss as few days as possible.
That's it. I'll update after I see J.J. this afternoon, if not sooner.
2. My sleep was terrible again last night. I think I got about four hours, but it was all broken up. I've figured out what the biggest problem is--I'm used to hearing J.J. snore and feeling him move around. It's waking me up not to have that going on.
3. I'm getting ready to go shower and get going on this "returning to work" adventure. Please, don't judge me for leaving my husband in the hospital while I work--I just know I'm going to need my time off when he comes home, so for now, I'm going to try to miss as few days as possible.
That's it. I'll update after I see J.J. this afternoon, if not sooner.
Thursday, February 19, 2009
Us
It struck me that some of you may only know one of us but not both. So here we are. Forgive my white balance in the first two pictures; I know it's too cool but Photoshopping is beyond me tonight!
P.S. I am woman, hear me roar. I just lit my water heater pilot!
End of Day Post, Super Early
I had to come home early tonight to work on relighting the water heater pilot light while I'm still conscious, so this is really early. But anyway, here's the daily round-up.
When I came back from posting last, J.J. was sitting in his chair by the side of his bed. He's been working with a walker with PT, and it seems to be going really well. His physical therapist, Justin, says J.J. is coming along really quickly.
J.J.'s dinner was delivered at 4:30 (honestly, who eats at 4:30?) and he actually ate 100% of it tonight. He even managed to eat his pudding with his right hand (the affected side, for those just entering into the madness). We conversed throughout dinner; he's really getting very conversational, as long as he doesn't have to put together a complex answer. He even had a little milestone--in his sentences, he seems to rattle off four or five words then hit the wall, and he can't go on. Tonight while I was standing in front of him and he was stroking my face (AW! Yes, I'm in love with my husband. We ARE this cute. Get over it.) he said, "How come...you...mmm". This may not sound like much, but he got the word "you" out after the wall. And the "mmm" was the start of "married". He asks me why I married him all the time. I always answer that I'm crazy, that's why.
Anyway, he also had his first real phone call with his mom. I held the phone up for him last night and he could only say hi and then nod answers to the rest of her questions. Tonight he actually conversed with her for a minute or two, while holding the phone himself.
He's also able to read again, thank goodness. Anyone who knows J.J. knows he is a voracious reader. I'm going to take him a selection of books when I go to the hospital tomorrow.
I think all of the above is possible because his blood pressure is down so much. His last reading before I left was 138/88. Oh, and his last neuro check showed that his right leg strength is now back to being even with his left. I don't think he's even going to need the walker for long.
Alright, I'd better get going on my chores for the day. After the water heater experience, I need to gather all the trash, change the litter box, clean out the fridge and do a couple of loads of laundry. Then sleep--I'm going back to work tomorrow for half the day. You'll get updates tomorrow, but they'll be late because it'll probably be at least 3:00 before I get to the hospital (I'm also going to go tour the rehab hospital and get my allergy shot tomorrow). And for those of you who are either 1) my actual mother--hi Mom! or 2) trying their best to imitate her. I have eaten. I discovered protein bars today. I had a bowl of cereal for breakfast and protein bars for both lunch and dinner. Is it ideal, no, but it's something to keep me going in the short-term. And I've done much better on my water intake today. And yes, I will report back and let you know that I didn't blow myself up with the water heater. I have some awesome detailed instructions from Cynthia from RWA and a lot of courage--I'm sure I'll be fine.
When I came back from posting last, J.J. was sitting in his chair by the side of his bed. He's been working with a walker with PT, and it seems to be going really well. His physical therapist, Justin, says J.J. is coming along really quickly.
J.J.'s dinner was delivered at 4:30 (honestly, who eats at 4:30?) and he actually ate 100% of it tonight. He even managed to eat his pudding with his right hand (the affected side, for those just entering into the madness). We conversed throughout dinner; he's really getting very conversational, as long as he doesn't have to put together a complex answer. He even had a little milestone--in his sentences, he seems to rattle off four or five words then hit the wall, and he can't go on. Tonight while I was standing in front of him and he was stroking my face (AW! Yes, I'm in love with my husband. We ARE this cute. Get over it.) he said, "How come...you...mmm". This may not sound like much, but he got the word "you" out after the wall. And the "mmm" was the start of "married". He asks me why I married him all the time. I always answer that I'm crazy, that's why.
Anyway, he also had his first real phone call with his mom. I held the phone up for him last night and he could only say hi and then nod answers to the rest of her questions. Tonight he actually conversed with her for a minute or two, while holding the phone himself.
He's also able to read again, thank goodness. Anyone who knows J.J. knows he is a voracious reader. I'm going to take him a selection of books when I go to the hospital tomorrow.
I think all of the above is possible because his blood pressure is down so much. His last reading before I left was 138/88. Oh, and his last neuro check showed that his right leg strength is now back to being even with his left. I don't think he's even going to need the walker for long.
Alright, I'd better get going on my chores for the day. After the water heater experience, I need to gather all the trash, change the litter box, clean out the fridge and do a couple of loads of laundry. Then sleep--I'm going back to work tomorrow for half the day. You'll get updates tomorrow, but they'll be late because it'll probably be at least 3:00 before I get to the hospital (I'm also going to go tour the rehab hospital and get my allergy shot tomorrow). And for those of you who are either 1) my actual mother--hi Mom! or 2) trying their best to imitate her. I have eaten. I discovered protein bars today. I had a bowl of cereal for breakfast and protein bars for both lunch and dinner. Is it ideal, no, but it's something to keep me going in the short-term. And I've done much better on my water intake today. And yes, I will report back and let you know that I didn't blow myself up with the water heater. I have some awesome detailed instructions from Cynthia from RWA and a lot of courage--I'm sure I'll be fine.
Saying FU to the ICU
Sorry about the delay in posting. The computer kiosks I've been using were down when I got in this morning. It was only slightly less painful for me to function without the computers as it might be if I were asked to function without my right arm. I am truly a child of the digital age.
Anyway, when I walked in I started toward J.J.'s room in the ICU only to find that the guy in room 6 was NOT my husband. Apparently I was being sent on a treasure hunt. When I finally found someone to point me in the right direction, I found out that J.J. had been moved to the medical unit this morning. So goodbye, ICU, and good riddance. We'll come back soon to visit the nurses when J.J.'s all recovered, but until then, I can't say that I'll miss it.
Room 2026 is so much more awesome. It's probably three times as big as the ICU room and has a really awesome cushy chair that converts to a bed. I'm very tempted to give it a test drive.
J.J. hasn't had PT yet today due to the move and Dr. Acula hasn't been around yet (natch, it's still light for crying out loud) but Speech Therapy came in shortly after I got here. His therapist says J.J. does not have a significant case of aphasia as we had originally thought. His bigger issue is something called apraxia of speech, and it's more of a muscle planning problem. Basically his wires are a little crossed and he's not getting the signals where they need to go. It's very common and often improves quite a bit with therapy.
He's saying a lot more today, including real sentences. For instance, his Heparin drip had run out and two nurses came in to hang a new bag. They were talking to each other but not necessarily to us (I HATE THAT, by the way!). J.J. started leaning back across the bed (he sits on the side most of the time unless he's asleep now). I asked him if he needed anything, and he said, "No, I'm just listening to them". Another example was when he was trying to find something other than soaps or talk shows on TV. He came across an episode of Burn Notice on USA and said, "Oh, sure, what the hell". He's answering yes and no verbally almost all the time and readily answers me back when I tell him I love him. It's really encouraging.
You may have noticed that I document a lot of small details. Part of this is because I want to remember as much as possible from one day to the next and I'm losing track of time. Some of it is also because I'm hoping at some point that when J.J.'s completely recovered and this is all in the past, we'll be able to share our story with other people in this situation.
To that end, I'm going to document what I've been up to today. I've had a busy morning as well. Went to our family doctor to start up some antidepressants. Figure if there's ever a situation in which I might be depressed, this is the one. I feel fine right now, but having grown up as the daughter of a psychology professor and having a BS in psychology myself, I know it takes some time for antidepressants to kick in. So I decided this would be a fine time to start. After this, went to Eli's school and picked up his homework. Getting ready to try to email as much of it as possible down to my mom so he can be working on it. Then I stopped by the kids' day care. I was greeted at the door by the director, Shelly. She brought me into her office and kept the tissues coming as I unloaded on her. I don't want to violate her privacy by saying what her situation was, but she has some experience with being in shoes somewhat like the ones I find myself in right now. She also prayed with me before I left, which was awesome.
I also talked to Leah's teacher, whose son had a stroke when he was not much older than J.J. is. His stroke was in the same area and his impairments were very similar to J.J.'s. He did his rehab at the same place J.J. will be. And he's doing great and back to living life, albeit a more health-conscious life. He actually volunteers as a peer mentor at the hospital, so we may be meeting him soon. I know everyone's outcomes are different, but it was really uplifting to hear about such a positive outcome.
Oh, and just because it's almost starting to be funny how everything is falling apart, my dad is in the hospital. He had to be admitted yesterday due to bleeding intestinal ulcers that caused his hemoglobin to be very low. He's having his fifth unit of blood transfused right now. Isn't five units an awful lot? I was under the impression there wasn't a whole lot more than that in the body to start with. I keep picturing him being asked, "Is there a blood type you've always wanted to be? 'Cause we're going to be starting from scratch!"
Alright, on that note, I'm going to quit blogging for a few and try to answer my email. Please know that I'm reading all of them, even if I don't always get back right away.
Anyway, when I walked in I started toward J.J.'s room in the ICU only to find that the guy in room 6 was NOT my husband. Apparently I was being sent on a treasure hunt. When I finally found someone to point me in the right direction, I found out that J.J. had been moved to the medical unit this morning. So goodbye, ICU, and good riddance. We'll come back soon to visit the nurses when J.J.'s all recovered, but until then, I can't say that I'll miss it.
Room 2026 is so much more awesome. It's probably three times as big as the ICU room and has a really awesome cushy chair that converts to a bed. I'm very tempted to give it a test drive.
J.J. hasn't had PT yet today due to the move and Dr. Acula hasn't been around yet (natch, it's still light for crying out loud) but Speech Therapy came in shortly after I got here. His therapist says J.J. does not have a significant case of aphasia as we had originally thought. His bigger issue is something called apraxia of speech, and it's more of a muscle planning problem. Basically his wires are a little crossed and he's not getting the signals where they need to go. It's very common and often improves quite a bit with therapy.
He's saying a lot more today, including real sentences. For instance, his Heparin drip had run out and two nurses came in to hang a new bag. They were talking to each other but not necessarily to us (I HATE THAT, by the way!). J.J. started leaning back across the bed (he sits on the side most of the time unless he's asleep now). I asked him if he needed anything, and he said, "No, I'm just listening to them". Another example was when he was trying to find something other than soaps or talk shows on TV. He came across an episode of Burn Notice on USA and said, "Oh, sure, what the hell". He's answering yes and no verbally almost all the time and readily answers me back when I tell him I love him. It's really encouraging.
You may have noticed that I document a lot of small details. Part of this is because I want to remember as much as possible from one day to the next and I'm losing track of time. Some of it is also because I'm hoping at some point that when J.J.'s completely recovered and this is all in the past, we'll be able to share our story with other people in this situation.
To that end, I'm going to document what I've been up to today. I've had a busy morning as well. Went to our family doctor to start up some antidepressants. Figure if there's ever a situation in which I might be depressed, this is the one. I feel fine right now, but having grown up as the daughter of a psychology professor and having a BS in psychology myself, I know it takes some time for antidepressants to kick in. So I decided this would be a fine time to start. After this, went to Eli's school and picked up his homework. Getting ready to try to email as much of it as possible down to my mom so he can be working on it. Then I stopped by the kids' day care. I was greeted at the door by the director, Shelly. She brought me into her office and kept the tissues coming as I unloaded on her. I don't want to violate her privacy by saying what her situation was, but she has some experience with being in shoes somewhat like the ones I find myself in right now. She also prayed with me before I left, which was awesome.
I also talked to Leah's teacher, whose son had a stroke when he was not much older than J.J. is. His stroke was in the same area and his impairments were very similar to J.J.'s. He did his rehab at the same place J.J. will be. And he's doing great and back to living life, albeit a more health-conscious life. He actually volunteers as a peer mentor at the hospital, so we may be meeting him soon. I know everyone's outcomes are different, but it was really uplifting to hear about such a positive outcome.
Oh, and just because it's almost starting to be funny how everything is falling apart, my dad is in the hospital. He had to be admitted yesterday due to bleeding intestinal ulcers that caused his hemoglobin to be very low. He's having his fifth unit of blood transfused right now. Isn't five units an awful lot? I was under the impression there wasn't a whole lot more than that in the body to start with. I keep picturing him being asked, "Is there a blood type you've always wanted to be? 'Cause we're going to be starting from scratch!"
Alright, on that note, I'm going to quit blogging for a few and try to answer my email. Please know that I'm reading all of them, even if I don't always get back right away.
That's It!
My life now officially resembles a sitcom. The pilot light's out on the water heater again.
The List
I've been asked multiple times if there's any help we need or anything anyone can do for us. Our needs are pretty minimal right now, but I'm going to toss out a few concrete suggestions for things that would help, if anyone is interested:
1. I'm going to need to learn how to do some of the more traditionally "manly" chores around the house, stuff like learning how to relight the pilot in the water heater if it goes out again, how to change the air filter in the furnace, etc. Just some basic home maintenance kind of stuff. I got married at 21, so I never had to learn and I feel so helpless. If you are handy (and PATIENT!) I'd love to get some lessons.
2. There is a big green overstuffed chair sitting in my garage that J.J. was supposed to be taking to the Goodwill. If someone who has a truck, van, SUV, etc. would want to get this out of my hair, I'd appreciate it. It's blocking access to the breaker box in the garage, and if something trips, I'm going to have enough trouble without wading over the chair. Even if you can think of a nonprofit group that would want to pick it up from the curb and could call to arrange that, that would be awesome too. It's just a little beyond me right now to plan that far ahead.
3. Don't underestimate how awesome cards/emails/letters are at this point. I've been reading them all out loud to J.J. and it really helps to raise both of our spirits. If you want to email, feel free to use my personal email, erinrobertson at sbcglobal dot net (use the appropriate punctuation--I just don't really need my address getting spammed anymore right now by any web-crawling bots). I've heard that Blogger makes it kind of hard to comment unless you already have a profile set up, but if you have one and want to leave a comment on one of the blog posts, that works too.
4. Our kids will be home this weekend. Playdates are about to become a godsend. Give me a call to set one up.
5. Once the kids are home, I'll get to polish off my rusty cooking skills. J.J. loves to cook and I can probably count on both hands the number of meals I've made since we got married. If you have quick, easy recipes, I'm very much interested.
I think that's about it for now. If I think of more, I'll let you know. And thanks, everyone for being so persistent!
1. I'm going to need to learn how to do some of the more traditionally "manly" chores around the house, stuff like learning how to relight the pilot in the water heater if it goes out again, how to change the air filter in the furnace, etc. Just some basic home maintenance kind of stuff. I got married at 21, so I never had to learn and I feel so helpless. If you are handy (and PATIENT!) I'd love to get some lessons.
2. There is a big green overstuffed chair sitting in my garage that J.J. was supposed to be taking to the Goodwill. If someone who has a truck, van, SUV, etc. would want to get this out of my hair, I'd appreciate it. It's blocking access to the breaker box in the garage, and if something trips, I'm going to have enough trouble without wading over the chair. Even if you can think of a nonprofit group that would want to pick it up from the curb and could call to arrange that, that would be awesome too. It's just a little beyond me right now to plan that far ahead.
3. Don't underestimate how awesome cards/emails/letters are at this point. I've been reading them all out loud to J.J. and it really helps to raise both of our spirits. If you want to email, feel free to use my personal email, erinrobertson at sbcglobal dot net (use the appropriate punctuation--I just don't really need my address getting spammed anymore right now by any web-crawling bots). I've heard that Blogger makes it kind of hard to comment unless you already have a profile set up, but if you have one and want to leave a comment on one of the blog posts, that works too.
4. Our kids will be home this weekend. Playdates are about to become a godsend. Give me a call to set one up.
5. Once the kids are home, I'll get to polish off my rusty cooking skills. J.J. loves to cook and I can probably count on both hands the number of meals I've made since we got married. If you have quick, easy recipes, I'm very much interested.
I think that's about it for now. If I think of more, I'll let you know. And thanks, everyone for being so persistent!
Slow But Steady
Holy seven hours of sleep, Batman! Five of them were even in a row! I feel significantly better now. Sleep rocks out loud.
Anyway, so I promised to do an end-of-the-day post for yesterday. Not a whole lot has changed since yesterday afternoon. More standing up, a few more little steps. His range of motion is getting better on his right arm, so he's naturally reaching for more things with it (J.J. is right handed). Of course, his depth perception is still off and his purposeful motion is not all the way back, so this led to humorous scenes such as dinner last night, when he was trying to reach his glass of water that was sitting behind his plate and kept putting his whole arm in his mashed potatoes. He's so stubborn, though--he didn't want me to help him get the glass. He finally got it, then I spent a moment cleaning gravy out of his IV site. Hopefully there are no gravy-borne toxins at this hospital.
His speech is getting somewhat better too. He is actually saying yes and no verbally most of the time now instead of just shaking his head. Three and four word phrases are pretty common. I'm even starting to forget to phrase questions in a way that can be answered yes or no because he's getting so much better at answering them. By the end of the day yesterday, though, his speech was pretty slurred again. I think he was just completely worn out. One of the aftereffect of stroke is sleepiness, so he's been more groggy than normal.
We're still in the ICU because his blood pressure has been running high again. It was 158/113 when I left last night. Hopefully we'll get that under control soon.
His oxygen (which he has been receiving through a nasal cannula) was discontinued yesterday. It's nice to not have that on his face. He hasn't had a nosebleed since.
I have a doctor appointment myself this morning, so I won't be at the hospital until around 12:00. I'll update you all after I get there.
Anyway, so I promised to do an end-of-the-day post for yesterday. Not a whole lot has changed since yesterday afternoon. More standing up, a few more little steps. His range of motion is getting better on his right arm, so he's naturally reaching for more things with it (J.J. is right handed). Of course, his depth perception is still off and his purposeful motion is not all the way back, so this led to humorous scenes such as dinner last night, when he was trying to reach his glass of water that was sitting behind his plate and kept putting his whole arm in his mashed potatoes. He's so stubborn, though--he didn't want me to help him get the glass. He finally got it, then I spent a moment cleaning gravy out of his IV site. Hopefully there are no gravy-borne toxins at this hospital.
His speech is getting somewhat better too. He is actually saying yes and no verbally most of the time now instead of just shaking his head. Three and four word phrases are pretty common. I'm even starting to forget to phrase questions in a way that can be answered yes or no because he's getting so much better at answering them. By the end of the day yesterday, though, his speech was pretty slurred again. I think he was just completely worn out. One of the aftereffect of stroke is sleepiness, so he's been more groggy than normal.
We're still in the ICU because his blood pressure has been running high again. It was 158/113 when I left last night. Hopefully we'll get that under control soon.
His oxygen (which he has been receiving through a nasal cannula) was discontinued yesterday. It's nice to not have that on his face. He hasn't had a nosebleed since.
I have a doctor appointment myself this morning, so I won't be at the hospital until around 12:00. I'll update you all after I get there.
Wednesday, February 18, 2009
My Apologies...
To those of you looking for an information-packed last post of the day. I am so freakin' exhausted I'm about to fall asleep in my Lean Cuisine (I just added it up and I've eaten 800 whole Calories today! See, I'm getting better...) Sybil the neurologist with his vampiric hours for doing rounds is to blame--and he didn't even freaking show up today! Apparently he decided he didn't really have much news so he didn't need to stop by. By the way, we're now referring to him as Dr. Acula, a la Scrubs, in honor of his nocturnal rounds. Perhaps we'll just rename the neurologist every day. He deserves it.
Anyway, I'll do a post in the morning to get you all caught up. See you soon!
Anyway, I'll do a post in the morning to get you all caught up. See you soon!
The New Crib
It's been a busy day. J.J. was able to stand up by the bed with Physical Therapy a couple of different times for about two minutes each time. The first time he even took a couple of steps. I think he'll be sitting in his chair later today. His speech is also getting better. We've discovered that he has a really hard time repeating things or answering questions when prompted with a specific response (along the lines of "Say my name"--see, told you life resembles a bad Destiny's Child song right now!) but when he gets to come up with his own answer he does quite a bit better. He's stringing together more three/four word phrases now.
We had a visit from the admissions person from the rehabilitation hospital J.J. will probably be admitted to after leaving Hendricks Regional. It's called Rehabilitation Hospital of Indianapolis, conveniently enough. I mean, no beating around the bush there.
Anyway, she gave us the brochures and told us she'd be back tomorrow to talk to us in more detail. She said she'd "give us a moment" to digest the information. I think everyone is a little unnerved that we aren't boohooing all over the place. Who has time for navel gazing? J.J. needs rehab, he goes to the rehab hospital. There you go. Makes sense to me.
Anyway, this place is over near 38th and 465 on the West side, making it easy to get to both from home and work. Actually, it's even close to the kids' day care. And they use very aggressive therapy techniques. We're all in favor of aggressive. We don't want any of that watered-down, it's-okay-if-you-can't-do-it kind of therapy. If Jillian Michaels from the Biggest Loser did PT, that's what we'd want.
So, that's where the digs are going to be very soon. We're not on the medical unit yet, but everyone is saying J.J. will probably only be in the hospital for another couple of days.
Oh, and insurance will cover the costs. Phew!
I'm at home right now (garbage disposal being installed as we speak), but will be heading back in a few. Keep watching for more updates--this man is moving so fast, I can barely keep up. I'm actually going to take my crappy little point-and-shoot camera with me this afternoon so I can show you all how awesome he looks :)
We had a visit from the admissions person from the rehabilitation hospital J.J. will probably be admitted to after leaving Hendricks Regional. It's called Rehabilitation Hospital of Indianapolis, conveniently enough. I mean, no beating around the bush there.
Anyway, she gave us the brochures and told us she'd be back tomorrow to talk to us in more detail. She said she'd "give us a moment" to digest the information. I think everyone is a little unnerved that we aren't boohooing all over the place. Who has time for navel gazing? J.J. needs rehab, he goes to the rehab hospital. There you go. Makes sense to me.
Anyway, this place is over near 38th and 465 on the West side, making it easy to get to both from home and work. Actually, it's even close to the kids' day care. And they use very aggressive therapy techniques. We're all in favor of aggressive. We don't want any of that watered-down, it's-okay-if-you-can't-do-it kind of therapy. If Jillian Michaels from the Biggest Loser did PT, that's what we'd want.
So, that's where the digs are going to be very soon. We're not on the medical unit yet, but everyone is saying J.J. will probably only be in the hospital for another couple of days.
Oh, and insurance will cover the costs. Phew!
I'm at home right now (garbage disposal being installed as we speak), but will be heading back in a few. Keep watching for more updates--this man is moving so fast, I can barely keep up. I'm actually going to take my crappy little point-and-shoot camera with me this afternoon so I can show you all how awesome he looks :)
J.J. In Da House!
I'm just short of doing cartwheels down the hall--yahoo!
When I walked into J.J.'s room a little while ago, he was laying down. I said, "Babe, you awake?" and he pulled himself up onto the side of the bed. From there, he stood up at the side of the bed! I asked him if he had been helped up by a therapist or if anyone knew he could do this, and he shook his head no. Apparently he just decided he's been taking this laying down long enough.
After I made him sit back down, I apologized to him for being later getting here today than I had told him I would be when I left last night (I did unearth the house-pride and was cleaning a little so the garbage disposal can be installed). He said, "No, no, that's okay" just as clearly as he would have on Sunday morning.
His blood pressure is also down considerably. His most recent reading was 146/90. Since the blood pressure was the only thing keeping us in the ICU, I think we'll be moving on up today to medical.
He's working with the speech therapist right now. It seems that part of his problem may be due to the fact that he's lost a little bit of the fine muscle control of his tongue and the muscles around his mouth. So this can be a focus for rehab.
Physical therapy is also waiting in the wings to work with him (they're lurking outside the door waiting for his speech therapist to leave).
I'm so glad to be able to make a really positive post for a change!
When I walked into J.J.'s room a little while ago, he was laying down. I said, "Babe, you awake?" and he pulled himself up onto the side of the bed. From there, he stood up at the side of the bed! I asked him if he had been helped up by a therapist or if anyone knew he could do this, and he shook his head no. Apparently he just decided he's been taking this laying down long enough.
After I made him sit back down, I apologized to him for being later getting here today than I had told him I would be when I left last night (I did unearth the house-pride and was cleaning a little so the garbage disposal can be installed). He said, "No, no, that's okay" just as clearly as he would have on Sunday morning.
His blood pressure is also down considerably. His most recent reading was 146/90. Since the blood pressure was the only thing keeping us in the ICU, I think we'll be moving on up today to medical.
He's working with the speech therapist right now. It seems that part of his problem may be due to the fact that he's lost a little bit of the fine muscle control of his tongue and the muscles around his mouth. So this can be a focus for rehab.
Physical therapy is also waiting in the wings to work with him (they're lurking outside the door waiting for his speech therapist to leave).
I'm so glad to be able to make a really positive post for a change!
Selfish Post
Almost every person I've talked to in the last couple of days has asked me how I'm doing. The answer you'll receive to this question varies greatly on when you ask me. I'll admit to having moments of great weakness when I sit in the dark, sobbing, wondering when and how we'll ever return to any semblance of normal life. I may seem like a liberated, independent woman. Emotionally, though, J.J. has always been the strong one.
Most of the time, though, I'm alright. I don't really have another choice. None of us would have chosen this path, but now that we're on it, I have to keep putting one foot in front of the other. I have only a limited amount of energy, and my husband and my children need it. I will continue to cheerlead for my man and perserve my children's lives in as intact a state as I can create. It's not like I'm doing any of this for fun; giving up is not an option.
For the last couple of days I've told J.J. at the end of the day that these have been probably the suckiest days of our lives, but at the close of each day one more day is behind us and we'll never have to relive it. Each minute that passes brings him that much closer to returning to me.
It helps that I have the support of awesome friends (including our co-workers, who are now firmly in the friend camp--I'm not going to segregate you into your own category) and a terrific family. And the most perfect husband ever, who is still the emotionally strong one in this relationship. And a loving Father who is with me every step of the way strengthening every fiber of my being. If my faith had ever wavered before in my life, it doesn't matter now. I know my God will see me through.
With that, I'm off to the hospital. I'll report in soon.
Most of the time, though, I'm alright. I don't really have another choice. None of us would have chosen this path, but now that we're on it, I have to keep putting one foot in front of the other. I have only a limited amount of energy, and my husband and my children need it. I will continue to cheerlead for my man and perserve my children's lives in as intact a state as I can create. It's not like I'm doing any of this for fun; giving up is not an option.
For the last couple of days I've told J.J. at the end of the day that these have been probably the suckiest days of our lives, but at the close of each day one more day is behind us and we'll never have to relive it. Each minute that passes brings him that much closer to returning to me.
It helps that I have the support of awesome friends (including our co-workers, who are now firmly in the friend camp--I'm not going to segregate you into your own category) and a terrific family. And the most perfect husband ever, who is still the emotionally strong one in this relationship. And a loving Father who is with me every step of the way strengthening every fiber of my being. If my faith had ever wavered before in my life, it doesn't matter now. I know my God will see me through.
With that, I'm off to the hospital. I'll report in soon.
Tuesday, February 17, 2009
Last Update of Day
I'm back at home. It's a little after 9:00 p.m., I'm going to have someone installing a garbage disposal in my kitchen (which looks like a bomb hit it) in my house (which looks like a somewhat larger bomb hit it) in a little over twelve hours, and I can't possibly muster the energy for house-pride. I've had five hours of sleep in the last 63 hours. I'm typing this update and crawling into my bed. Hopefully I'll have a little more motivation in the morning.
The neurologist (who I shall now dub Sybil, as he was strangely upbeat and optimistic today, after channeling one of the horsemen of the Apocalypse yesterday) finally checked in at about 7:30 this evening. He didn't have a whole lot to say other than that J.J.'s movement is looking really good and he's recovering nicely. And that his blood pressure is higher than they want it to be. It was 186/126 at this point. Strangely, his blood pressure medication order had been canceled this afternoon and he had been almost ten hours without his meds at this point. They restarted the meds and his blood pressure is moving down a little now. It was 166/113 when I left. As soon as J.J.'s blood pressure is stable, he'll be moved up to the medical unit, which has larger rooms with comfortable chairs that fold out, chaise longue-style. I can't wait.
Today the story has been all about J.J.'s physical recovery. He's been able to raise his right arm above his head and has now started doing a few dexterity exercises, like tapping his fingers against his palm. He's also working on purposful movement, like reaching to touch his nose or to give his therapist a high five. With his leg, he's been working on lifting his knee, flexing his toes (his control was so good on this area that the therapist couldn't get J.J.'s toes to budge at all when he tried to press against J.J.) and moving his leg out to the side to strengthen the hip flexors. He's been able to do everything the therapists asked, even though it's not always easy. Sometimes he tells them no. Then I tell him no, and he does it. See, the dynamics of our relationship are still completely intact! He started sitting on the edge of the bed this morning and was sitting for about two hours cumulative time today. The last time, he even managed to sit up completely on his own.
He had a swallow study this morning and passed. He's now able to eat a regular diet. He had turkey, mashed potatoes and corn for lunch and a cheeseburger and vegetable soup for dinner. He's not eating a tremendous amount, partly because he's feeding himself with his left hand and gets frustrated at how long it takes and partly because the whole process of getting set up to eat, sitting on the edge of the bed, cutting, chewing, etc. is just really exhausting for him. He's drinking all the water he can get his hands on, though. At lunch he was dribbling a little water from the corner of his mouth, but by dinner, no problems at all. He says that after two days of NPO (Nothing Per Oral, I think--at least that gives you the idea), water is heaven.
His speech has lagged today, but I think it's primarily because of the emphasis on physical recovery and how wiped he is from that. I got a couple of new words this morning before all the PT and stuff, but it's still primarily one word or two word phrases. His speech is very intelligible but slightly slurred. He's incredibly angry about this. He worked for almost an hour this afternoon on trying to say my name. He still hasn't managed it. Or his name, for that matter.
His eyesight is also problematic. He reports that everything is kind of fuzzy and it takes a while for him to focus. I think this is most likely due to the uber-high blood pressure, though.
Stuff in store for tomorrow:
--PT plans to get J.J. out of bed and into a chair
--Speech Therapy will conduct their evaluation
--I'll meet with the Care Coordinator to discuss how my insurance is going to handle all of this
--Possible room change out of the ICU
All in all, a pretty decent day. I'll take it.
Now, before I fall asleep at the keyboard...
Good night.
The neurologist (who I shall now dub Sybil, as he was strangely upbeat and optimistic today, after channeling one of the horsemen of the Apocalypse yesterday) finally checked in at about 7:30 this evening. He didn't have a whole lot to say other than that J.J.'s movement is looking really good and he's recovering nicely. And that his blood pressure is higher than they want it to be. It was 186/126 at this point. Strangely, his blood pressure medication order had been canceled this afternoon and he had been almost ten hours without his meds at this point. They restarted the meds and his blood pressure is moving down a little now. It was 166/113 when I left. As soon as J.J.'s blood pressure is stable, he'll be moved up to the medical unit, which has larger rooms with comfortable chairs that fold out, chaise longue-style. I can't wait.
Today the story has been all about J.J.'s physical recovery. He's been able to raise his right arm above his head and has now started doing a few dexterity exercises, like tapping his fingers against his palm. He's also working on purposful movement, like reaching to touch his nose or to give his therapist a high five. With his leg, he's been working on lifting his knee, flexing his toes (his control was so good on this area that the therapist couldn't get J.J.'s toes to budge at all when he tried to press against J.J.) and moving his leg out to the side to strengthen the hip flexors. He's been able to do everything the therapists asked, even though it's not always easy. Sometimes he tells them no. Then I tell him no, and he does it. See, the dynamics of our relationship are still completely intact! He started sitting on the edge of the bed this morning and was sitting for about two hours cumulative time today. The last time, he even managed to sit up completely on his own.
He had a swallow study this morning and passed. He's now able to eat a regular diet. He had turkey, mashed potatoes and corn for lunch and a cheeseburger and vegetable soup for dinner. He's not eating a tremendous amount, partly because he's feeding himself with his left hand and gets frustrated at how long it takes and partly because the whole process of getting set up to eat, sitting on the edge of the bed, cutting, chewing, etc. is just really exhausting for him. He's drinking all the water he can get his hands on, though. At lunch he was dribbling a little water from the corner of his mouth, but by dinner, no problems at all. He says that after two days of NPO (Nothing Per Oral, I think--at least that gives you the idea), water is heaven.
His speech has lagged today, but I think it's primarily because of the emphasis on physical recovery and how wiped he is from that. I got a couple of new words this morning before all the PT and stuff, but it's still primarily one word or two word phrases. His speech is very intelligible but slightly slurred. He's incredibly angry about this. He worked for almost an hour this afternoon on trying to say my name. He still hasn't managed it. Or his name, for that matter.
His eyesight is also problematic. He reports that everything is kind of fuzzy and it takes a while for him to focus. I think this is most likely due to the uber-high blood pressure, though.
Stuff in store for tomorrow:
--PT plans to get J.J. out of bed and into a chair
--Speech Therapy will conduct their evaluation
--I'll meet with the Care Coordinator to discuss how my insurance is going to handle all of this
--Possible room change out of the ICU
All in all, a pretty decent day. I'll take it.
Now, before I fall asleep at the keyboard...
Good night.
Variety is the Spice of Life...
I think it's time for a little levity, how about you?
Today our friend Nova and I were walking back in from the quest to buy a new garbage disposal (yes, after all that, it had to be replaced after all) and walked past the little coffee shop in the hospital. In addition to coffee and bagels, they sell a couple different sandwiches each day. The day's selections are posted prominently out front.
Today's Selections:
Chicken Salad on Croissant
Chicken Salad in Bowl
Apparently the important form of variety in this equation is not the substance of the sandwich, but the manner in which it is dispensed. I was tempted to go inside and ask if I could just have the chicken salad scooped into my hand or daubed onto the end of my nose. Or follow Nova's suggestion, which was to order a croissant in a bowl. Although I'm fairly sure it would have to come with a side order of chicken salad.
My recommendations for tomorrow's selections:
Chicken Salad Kabobs
Chicken Salad a la Mode
Today our friend Nova and I were walking back in from the quest to buy a new garbage disposal (yes, after all that, it had to be replaced after all) and walked past the little coffee shop in the hospital. In addition to coffee and bagels, they sell a couple different sandwiches each day. The day's selections are posted prominently out front.
Today's Selections:
Chicken Salad on Croissant
Chicken Salad in Bowl
Apparently the important form of variety in this equation is not the substance of the sandwich, but the manner in which it is dispensed. I was tempted to go inside and ask if I could just have the chicken salad scooped into my hand or daubed onto the end of my nose. Or follow Nova's suggestion, which was to order a croissant in a bowl. Although I'm fairly sure it would have to come with a side order of chicken salad.
My recommendations for tomorrow's selections:
Chicken Salad Kabobs
Chicken Salad a la Mode
What's that, you ask? Just the other shoe...
I was out grabbing lunch when the cardiologist came in today. My mother-in-law reported back that J.J. was told that his blood pressure is still high (last reading was 178/104, so we can safely file this in the "no crap, really?" category) and that he needs to lose weight, but that he really didn't have much new info.
But Emilee had some different news. J.J. has congestive heart failure. The hope is that with weight loss the strain on will reduce and the issue may resolve itself. Also, it is extremely likely that J.J. will need to be admitted to a rehabilitation facility after he is discharged from the hospital. This is a ginormous bummer, since aside from the fact that I WANT MY HUSBAND HOME NOW, I'm not sure how much our insurance will cover on this. I'm supposed to talk to someone tomorrow about this.
I need to get back. The neurologist (the original Mr. Sunshine) will be in soon and I don't want to miss this consult as well.
But Emilee had some different news. J.J. has congestive heart failure. The hope is that with weight loss the strain on will reduce and the issue may resolve itself. Also, it is extremely likely that J.J. will need to be admitted to a rehabilitation facility after he is discharged from the hospital. This is a ginormous bummer, since aside from the fact that I WANT MY HUSBAND HOME NOW, I'm not sure how much our insurance will cover on this. I'm supposed to talk to someone tomorrow about this.
I need to get back. The neurologist (the original Mr. Sunshine) will be in soon and I don't want to miss this consult as well.
Awesome PT Session!
Well, we have seen neither hide nor hair of the neurologist yet, but Physical Therapy has been in for J.J.'s first session of the day. J.J. was able to sit up on the side of the bed and do some exercises (knee lifts, touching his nose with his affected hand, etc.). He is moving so much better. I think we (J.J., me, J.J.'s mom Linda and J.J.'s uncle Randy) are so encouraged by his progress now. I dare that neurologist to bring me down with his pessimistic delivery style.
J.J.'s gone for a swallow study now. Depending on the results, he may get to have some fluids and maybe even some food at some point (he's been on nothing but IV fluids since his admission). He'll be gone for an hour or so. I'll keep you posted on what we find out.
J.J.'s gone for a swallow study now. Depending on the results, he may get to have some fluids and maybe even some food at some point (he's been on nothing but IV fluids since his admission). He'll be gone for an hour or so. I'll keep you posted on what we find out.
Quick Morning Update
So following my bracing morning shower (which wasn't too terrible and which I got through--kind of metaphoric for the last few days, actually!) I'm back at the hospital. We have the same awesome nurse again today that we had from 7 a.m. to 7 p.m. yesterday. Emilee rocks!
I also found a bank of computers for use by family/friends of patients. This will be so much easier than what I thought I'd be doing, which is updating from my phone. My pointer-finger-texting-typing skills are pretty dope, but this will be significantly faster.
Anyway, J.J.'s movement is getting better. His left side doesn't seem to be impacted at all now and the right is coming along. He's able to pick his heel up off the bed and move his knee up and down. The right arm, which he's been moving fairly well, doesn't seem to be as much of a chore. He also asked me, "What's wrong?" when I walked in, adding two more words to the list of things he can say. I feel like a new mother--"Did you hear that? He's up to fifteen words now!!!"
He did have a nosebleed last night--thank you, heparin drip. His bed looks like he's been performing ritual sacrifice. While he's getting cleaned up, I thought I'd update y'all. Plus I think he was tired of listening to me tell him that his ponytail (which Emilee put right on top of his skull) makes him look like a Skipper doll. Hey, maybe if I'm truly annoying, he'll tell me to shut up and add more words to his list. There is a method to my maddness.
We're both kinda bored and looking for anything to break the monotony. Feel free to call, email, text or stop by. Maybe if we throw a big ol' party in J.J.'s room, they'll throw us out of the ICU.
Our J.J. will be back to us soon. Keep the faith, y'all.
I also found a bank of computers for use by family/friends of patients. This will be so much easier than what I thought I'd be doing, which is updating from my phone. My pointer-finger-texting-typing skills are pretty dope, but this will be significantly faster.
Anyway, J.J.'s movement is getting better. His left side doesn't seem to be impacted at all now and the right is coming along. He's able to pick his heel up off the bed and move his knee up and down. The right arm, which he's been moving fairly well, doesn't seem to be as much of a chore. He also asked me, "What's wrong?" when I walked in, adding two more words to the list of things he can say. I feel like a new mother--"Did you hear that? He's up to fifteen words now!!!"
He did have a nosebleed last night--thank you, heparin drip. His bed looks like he's been performing ritual sacrifice. While he's getting cleaned up, I thought I'd update y'all. Plus I think he was tired of listening to me tell him that his ponytail (which Emilee put right on top of his skull) makes him look like a Skipper doll. Hey, maybe if I'm truly annoying, he'll tell me to shut up and add more words to his list. There is a method to my maddness.
We're both kinda bored and looking for anything to break the monotony. Feel free to call, email, text or stop by. Maybe if we throw a big ol' party in J.J.'s room, they'll throw us out of the ICU.
Our J.J. will be back to us soon. Keep the faith, y'all.
Fraking Water Heater
Pilot light's out on the water heater. Have no idea how to relight it and don't wish to blow myself up this morning, so guess I'll be taking a super cold shower.
God, I miss having that man around.
God, I miss having that man around.
Monday, February 16, 2009
Knew I forgot something!
CVA (in blog title)=Cerebrovascular Accident=Stroke. Not very creative on zero sleep in two days.
Top Ten Best Things About Husband Being in ICU
1. Husband in ICU diet is very effective. I think I've eaten 500 calories today.
2. Free plumbing advice received in ICU waiting room.
3. Have been offered cash more times than I can count today. And am not in revealing top.
4. Thrill of accomplishment from learning how to work hospital sink faucets, which were apparently designed by NASA...
5. Husband's chuckle now very gravelly and cute.
6. Know exactly where husband socks are--none in middle of floor.
7. Entire ICU waiting room bonding over rightness of bashing Octo-Mom.
8. Doctors calling "Mrs. Robertson" lead to fun game of figuring out whether looking for mother-in-law or self.
9. Parking at main entrance/walking to ICU is efficient way of getting in cardio power walk.
10. It's only temporary.
2. Free plumbing advice received in ICU waiting room.
3. Have been offered cash more times than I can count today. And am not in revealing top.
4. Thrill of accomplishment from learning how to work hospital sink faucets, which were apparently designed by NASA...
5. Husband's chuckle now very gravelly and cute.
6. Know exactly where husband socks are--none in middle of floor.
7. Entire ICU waiting room bonding over rightness of bashing Octo-Mom.
8. Doctors calling "Mrs. Robertson" lead to fun game of figuring out whether looking for mother-in-law or self.
9. Parking at main entrance/walking to ICU is efficient way of getting in cardio power walk.
10. It's only temporary.
One more time, from the top...
For those of you joining our story already in progress, I'm creating this blog to keep our friends, family, coworkers and all the rest of y'all in the loop about the progress of my husband J.J.'s fight to overcome the odds and recover fully from the stroke he endured on 2/15/09.
Coming up on 24 hours ago now, we were enjoying a normal family Sunday day. Well, for appropriate values of enjoy--Leah (our four year old) was throwing a major grump about the vegetable soup J.J. had made for dinner, and J.J. was maintaining that he would sit up all night with her if he had to so he could ensure she ate at least some of the soup. Oh, do I wish that's why we were sitting up all night.
Around 8:45 p.m. J.J. started up the stairway to put Leah to bed. He got three or four steps up and collapsed, slithering down the stairs on his stomach. He was clutching his right leg as he landed on the floor. "Charlie Horse?" I asked, knowing he gets some really killer intense muscle cramps. He nodded and moaned in pain. I left him to go upstairs to get the kids to bed, since by this point they were standing frozen at the top of the stairway staring in disbelief at their daddy. Got them all tucked in, came back downstairs. J.J.'s sitting at the bottom of the stairs. "Any better?" I asked. He nodded. I decided to just leave him alone to give him the space he needed to be in pain without an audience. I wandered into the kitchen to start cleaning up dinner. I yelled back at J.J. to ask if the dishes in the dishwasher were clean or dirty. J.J.'s reply deserves a phoenetic spelling...cllellch.
Anyway, since I now knew something was wrong, I sat with J.J. and hemmed and hawed for a moment about whether we did indeed have a 911-worthy emergency. We finally decided that we did. I called my mother so she could get on the road to come sit with the kids (about a 90 minute drive), then called the paramedics.
Twenty minutes later, the paramedics arrived. I remember very vividly that the lead paramedic took one look at my apparently healthy 33 year old husband sitting in the chair in our living room and asked what made us call them, seriously. I explained his symptoms. I think they were on the verge of not taking him when they took his blood pressure--178/125.
It was at this point that I got my first exposure to a very fun game; in-this-instant-we're-going-to-need-you-to-make-a-snap-decision-that-may-alter-your-life-or-your-husbands'. "Where do you want us to take him?" I was asked. I chose Hendricks Regional, due to the fact that our family doctor and the cardiologist J.J. saw three weeks ago (no, he doesn't have a long-standing cardiac history--more on this later, if I get a chance) both had privileges there. And whisk, they were gone.
I won't bore you with the details of the time I spent waiting for my mother to get to us so I could leave the kids. Suffice it to say that I was almost in tears when our garbage disposal stopped working (think I know how to fix it now--thanks Donna!). I was out the door the instant my mother arrived. By the way, the kids are indeed now down at my mother's house. We're trying to keep them as far from this as possible right now.
As soon as I walked in the door at the ER, the doctor was all over me with another snap decision: whether or not to administer clot-busting drugs. He advised that giving them carried a 3-5% risk of killing J.J. outright. I decided to forego the drugs. Incapacitated husband I can deal with. Dead, not so much.
The doctor filled me in that J.J. had been completely unable to move his right side when he got to the ER. By the time I got there, he was wiggling the toes on his right foot and waving his hand around. This was very encouraging to me, and I think I took my first deep breath since this whole ordeal began.
During the time we spent in the ER, J.J. seemed to be getting much better. At about 2:00, we got notice it was time to move it on out for the ICU. After getting him settled for the night, I kissed him and headed home to get some sleep.
Oh, this soooo did not happen.
What I did instead was laundry. And a few more dishes. And wrestling of the cat back into the pantry so I didn't have to deal with him hiding in my closet. By the way, what IS it with this cat and my closet? Is cotton-poly blend really laced with tuna???
I went to work briefly this morning. Most normal I've felt all day.
I came back to the hospital at about 9:00 a.m. to find J.J.'s great-uncle and J.J.'s boss Brian waiting to see him. J.J. had been taken for a test and wasn't there. So we all settled in to wait.
At this point, I must give a shout-out to the Armstrong folks. We had vistors, phone calls and a huge show of concern from these awesome people. You don't know how uplifting it is to know that J.J. is really appreciated by his employer. I probably also need to offer an apology to anyone I offended and/or made uncomfortable by using my unique blend of gallows humor and tears today. I'll do better tomorrow, really.
I finally got to go back to see J.J. at 11:30 a.m. (along with R.W. Armstrong HR Director Donna). His color looked much better. But his movement on his right side was much worse.
Let me pause for just a moment to note how startling it is to walk into the hospital and see my gravely ill husband looking basically just like he always does. It's not until you start talking to him that you notice the differences.
J.J. has aphasia. He's cognitively still my J.J. and completely understands everything I say to him. He can nod yes and no appropriately and will even say a few words/simple phrases, like: yeah, okay, alright, hi, better, it's okay, I'm sorry, and my favorite, I love you. I did get a glimpse at his sarcasm when he told me, "Why, thank you" when I told him his hair was completely out of control. But anything more is impossible for him to say right now. I can tell he's incredibly frustrated by this as well, so I'm trying to reframe all of my questions as yes/no questions.
Over the day today, J.J. has had multiple tests and consults by both a cardiologist and a neurologist. And here's what I know, such as it is...
We have no idea why J.J. had the stroke. May never know. But right now it looks like there's a lesion on the left side of his brain (which impacts the right side of the body, remember) where cell death has occured. We're not sure if this will be permanent. We also don't really know to what extent this will impact/limit his function in the future. His carotid arteries are clear. He doesn't have any active bleeds. But he does look to have a blockage in his MCA (Mid Cranial Artery, I think?) so we'll be watching to see how this resolves.
The first time I met with the neurologist today, he said he thinks J.J. will be able to walk and regain some use of his hand. He also said he'll talk, although his speech will probably be slurred or slow. I say this neurologist doesn't know my husband and the strength he possesses. The most important thing in J.J.'s life is his family. I know he will move heaven and earth to bring himself back to us.
Our motto right now--someone's got to beat the odds. Might as well be Team Erin and J.J. (this, by the way, is kind of an in-joke that stuck--go with it!)
Thanks for reading this far. Please leave your comments--I'll read them all off to J.J. to let him know how many people are rooting for him.
I'll let you know more as I know more.
Coming up on 24 hours ago now, we were enjoying a normal family Sunday day. Well, for appropriate values of enjoy--Leah (our four year old) was throwing a major grump about the vegetable soup J.J. had made for dinner, and J.J. was maintaining that he would sit up all night with her if he had to so he could ensure she ate at least some of the soup. Oh, do I wish that's why we were sitting up all night.
Around 8:45 p.m. J.J. started up the stairway to put Leah to bed. He got three or four steps up and collapsed, slithering down the stairs on his stomach. He was clutching his right leg as he landed on the floor. "Charlie Horse?" I asked, knowing he gets some really killer intense muscle cramps. He nodded and moaned in pain. I left him to go upstairs to get the kids to bed, since by this point they were standing frozen at the top of the stairway staring in disbelief at their daddy. Got them all tucked in, came back downstairs. J.J.'s sitting at the bottom of the stairs. "Any better?" I asked. He nodded. I decided to just leave him alone to give him the space he needed to be in pain without an audience. I wandered into the kitchen to start cleaning up dinner. I yelled back at J.J. to ask if the dishes in the dishwasher were clean or dirty. J.J.'s reply deserves a phoenetic spelling...cllellch.
Anyway, since I now knew something was wrong, I sat with J.J. and hemmed and hawed for a moment about whether we did indeed have a 911-worthy emergency. We finally decided that we did. I called my mother so she could get on the road to come sit with the kids (about a 90 minute drive), then called the paramedics.
Twenty minutes later, the paramedics arrived. I remember very vividly that the lead paramedic took one look at my apparently healthy 33 year old husband sitting in the chair in our living room and asked what made us call them, seriously. I explained his symptoms. I think they were on the verge of not taking him when they took his blood pressure--178/125.
It was at this point that I got my first exposure to a very fun game; in-this-instant-we're-going-to-need-you-to-make-a-snap-decision-that-may-alter-your-life-or-your-husbands'. "Where do you want us to take him?" I was asked. I chose Hendricks Regional, due to the fact that our family doctor and the cardiologist J.J. saw three weeks ago (no, he doesn't have a long-standing cardiac history--more on this later, if I get a chance) both had privileges there. And whisk, they were gone.
I won't bore you with the details of the time I spent waiting for my mother to get to us so I could leave the kids. Suffice it to say that I was almost in tears when our garbage disposal stopped working (think I know how to fix it now--thanks Donna!). I was out the door the instant my mother arrived. By the way, the kids are indeed now down at my mother's house. We're trying to keep them as far from this as possible right now.
As soon as I walked in the door at the ER, the doctor was all over me with another snap decision: whether or not to administer clot-busting drugs. He advised that giving them carried a 3-5% risk of killing J.J. outright. I decided to forego the drugs. Incapacitated husband I can deal with. Dead, not so much.
The doctor filled me in that J.J. had been completely unable to move his right side when he got to the ER. By the time I got there, he was wiggling the toes on his right foot and waving his hand around. This was very encouraging to me, and I think I took my first deep breath since this whole ordeal began.
During the time we spent in the ER, J.J. seemed to be getting much better. At about 2:00, we got notice it was time to move it on out for the ICU. After getting him settled for the night, I kissed him and headed home to get some sleep.
Oh, this soooo did not happen.
What I did instead was laundry. And a few more dishes. And wrestling of the cat back into the pantry so I didn't have to deal with him hiding in my closet. By the way, what IS it with this cat and my closet? Is cotton-poly blend really laced with tuna???
I went to work briefly this morning. Most normal I've felt all day.
I came back to the hospital at about 9:00 a.m. to find J.J.'s great-uncle and J.J.'s boss Brian waiting to see him. J.J. had been taken for a test and wasn't there. So we all settled in to wait.
At this point, I must give a shout-out to the Armstrong folks. We had vistors, phone calls and a huge show of concern from these awesome people. You don't know how uplifting it is to know that J.J. is really appreciated by his employer. I probably also need to offer an apology to anyone I offended and/or made uncomfortable by using my unique blend of gallows humor and tears today. I'll do better tomorrow, really.
I finally got to go back to see J.J. at 11:30 a.m. (along with R.W. Armstrong HR Director Donna). His color looked much better. But his movement on his right side was much worse.
Let me pause for just a moment to note how startling it is to walk into the hospital and see my gravely ill husband looking basically just like he always does. It's not until you start talking to him that you notice the differences.
J.J. has aphasia. He's cognitively still my J.J. and completely understands everything I say to him. He can nod yes and no appropriately and will even say a few words/simple phrases, like: yeah, okay, alright, hi, better, it's okay, I'm sorry, and my favorite, I love you. I did get a glimpse at his sarcasm when he told me, "Why, thank you" when I told him his hair was completely out of control. But anything more is impossible for him to say right now. I can tell he's incredibly frustrated by this as well, so I'm trying to reframe all of my questions as yes/no questions.
Over the day today, J.J. has had multiple tests and consults by both a cardiologist and a neurologist. And here's what I know, such as it is...
We have no idea why J.J. had the stroke. May never know. But right now it looks like there's a lesion on the left side of his brain (which impacts the right side of the body, remember) where cell death has occured. We're not sure if this will be permanent. We also don't really know to what extent this will impact/limit his function in the future. His carotid arteries are clear. He doesn't have any active bleeds. But he does look to have a blockage in his MCA (Mid Cranial Artery, I think?) so we'll be watching to see how this resolves.
The first time I met with the neurologist today, he said he thinks J.J. will be able to walk and regain some use of his hand. He also said he'll talk, although his speech will probably be slurred or slow. I say this neurologist doesn't know my husband and the strength he possesses. The most important thing in J.J.'s life is his family. I know he will move heaven and earth to bring himself back to us.
Our motto right now--someone's got to beat the odds. Might as well be Team Erin and J.J. (this, by the way, is kind of an in-joke that stuck--go with it!)
Thanks for reading this far. Please leave your comments--I'll read them all off to J.J. to let him know how many people are rooting for him.
I'll let you know more as I know more.
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