Yesterday we went to the neurosurgeon's office for evaluation. This was our first visit since being released from the hospital. All things considered he thought she was doing well, but he has instructed her to stay off work and not to drive until the next evaluation on March 29. As frustrating as it is for Chris he and his staff tell her this was a major major thing and recovery is slow at best, so we are following all suggestions and giving it time.
Her back/hip/leg pain seems to be getting better and Chris feels the twice a week physical therapy is helping. The new pain med is a step down from percocet, and she is trying not to take it at all during the day, but she has trouble sleeping so it is usually needed in the evening.
We have two upcoming cardiology related appointments, one for a nuclear stress test and the other for her to wear a heart monitor for 24 hours. Once these tests are complete we will see a cardiologist to discuss. This stems from the two episodes of rapid AFib she had while in the hospital.
We have also been referred to a neuropsychologist for cognitive testing, perhaps leading to cognitive therapy. This is to address the trouble she is having with concentration. And they are going to have someone who runs a support group for people with a like condition contact us. I think that's a good idea too.
So, we are hanging in there.
Friday, February 10, 2012
Saturday, February 4, 2012
One month ago today
It is hard to believe that it has been a month since this happened. The whole thing is kind of a blur, but as I look back I can't help but feel fortunate to have Chris recovering as she is. Since my last post, already a week ago, not too much has changed. She still has lots of pain in her back, hips, and legs and is still taking the pain meds although she's trying not to during the day.
We have now been to physical therapy twice. The first time was more of an evaluation, with some light stretching, and the second time was more light stretching (all while lying down) and some leg lifts, and massage. Both times she wanted to walk from the parking lot to the building instead of me borrowing the wheelchair, and that was pretty low and slow, but I consider it to be a positive that she was able to do so. And she thought the physical therapy helped. We go again on Tuesday and Thursday next week.
We also see the neurosurgeon Thursday morning so I am compiling a list of questions, and we'll see what his thoughts are about her pain and also her lack of concentration. That could be the pain meds, but she says aside from making the pain less she doesn't feel dopey or sleepy when she takes the meds, so I don't know. We'll also have to get a new prescription from him for pain and we are going to suggest something less potent and see if that helps. On Monday we'll call the cardiologist we were referred to while in the hospital. She wanted to see Chris at three weeks after release to follow up on the rapid Afibs that occurred twice while she was inpatient.
Chris does feel better about getting around the house on her own some, so she is not totally in bed or on the couch, and I do think getting around a bit is good for her both physically and mentally. We continue to be thankful for everyones concern. The house is looking like an arboretum and I am getting fat from the meals friends have prepared for us. And all of the cards...just unbelievable. Thank you all again.
Will let you know what the doc says.
We have now been to physical therapy twice. The first time was more of an evaluation, with some light stretching, and the second time was more light stretching (all while lying down) and some leg lifts, and massage. Both times she wanted to walk from the parking lot to the building instead of me borrowing the wheelchair, and that was pretty low and slow, but I consider it to be a positive that she was able to do so. And she thought the physical therapy helped. We go again on Tuesday and Thursday next week.
We also see the neurosurgeon Thursday morning so I am compiling a list of questions, and we'll see what his thoughts are about her pain and also her lack of concentration. That could be the pain meds, but she says aside from making the pain less she doesn't feel dopey or sleepy when she takes the meds, so I don't know. We'll also have to get a new prescription from him for pain and we are going to suggest something less potent and see if that helps. On Monday we'll call the cardiologist we were referred to while in the hospital. She wanted to see Chris at three weeks after release to follow up on the rapid Afibs that occurred twice while she was inpatient.
Chris does feel better about getting around the house on her own some, so she is not totally in bed or on the couch, and I do think getting around a bit is good for her both physically and mentally. We continue to be thankful for everyones concern. The house is looking like an arboretum and I am getting fat from the meals friends have prepared for us. And all of the cards...just unbelievable. Thank you all again.
Will let you know what the doc says.
Saturday, January 28, 2012
Saturday
Things are about the same. Chris still has good periods and bad spells. Her main problem continues to be the pain in her back, hips, legs, etc. I spoke to the neurosurgeon about this and he agreed that it probably has some to do with lack of use, but another thing it could be is blood from the initial bleed may have gotten into her spinal fluid and gravity has carried it down through the central nervous system irritating everything along the way. I now believe this is the case. If so until the blood breaks down and is finally absorbed this discomfort will go on. The good news is that the ever present headaches seem to be subsiding.
We did visit our regular physician on Thursday to check in and bring him up to speed. It was quite a chore. The office is on the 7th floor of a nearby building here in Reston, and it is a pretty long walk from the parking lot across a wide concrete walkway to the building entrance. I had to leave her in the car, go up and borrow their wheelchair, then return to get her, and the reverse when we left.
Our doctor's office has a small physical therapy unit, so we signed up for a session this coming Tuesday. We have not heard back from our other inquiries, and the neurosurgeon felt we didn't need a neurologically specialized place. Chris is kind of dreading making the trip to do that, I think because it is an ordeal just to get there. We'll see how it goes.
She is also having some issues with staying focused, especially reading and doing her puzzle books. That could have something to do with the continued use of percocet for her pain but we'll bring it up at our Feb. 9 appointment with the neurosurgeon.
She does seem to be sleeping better at night - and so am I :-), so that is a big positive. She actually prefers sleeping on a futon rather than in bed. Whatever works. So she'll spend half her day upstairs on the futon then we'll help her downstairs and she'll spend several hours in the family room.
I don't feel the need to be with her all of the time now, so today while the girls were at work I went to my office for a few hours and then did some grocery shopping - although we are certainly not lacking for food due to the culinary skills of many friends and neighbors. Thanks to all for the food, the cards, the calls, flowers, emails, texts, and visits. Your kindness is truly overwhelming.
We did visit our regular physician on Thursday to check in and bring him up to speed. It was quite a chore. The office is on the 7th floor of a nearby building here in Reston, and it is a pretty long walk from the parking lot across a wide concrete walkway to the building entrance. I had to leave her in the car, go up and borrow their wheelchair, then return to get her, and the reverse when we left.
Our doctor's office has a small physical therapy unit, so we signed up for a session this coming Tuesday. We have not heard back from our other inquiries, and the neurosurgeon felt we didn't need a neurologically specialized place. Chris is kind of dreading making the trip to do that, I think because it is an ordeal just to get there. We'll see how it goes.
She is also having some issues with staying focused, especially reading and doing her puzzle books. That could have something to do with the continued use of percocet for her pain but we'll bring it up at our Feb. 9 appointment with the neurosurgeon.
She does seem to be sleeping better at night - and so am I :-), so that is a big positive. She actually prefers sleeping on a futon rather than in bed. Whatever works. So she'll spend half her day upstairs on the futon then we'll help her downstairs and she'll spend several hours in the family room.
I don't feel the need to be with her all of the time now, so today while the girls were at work I went to my office for a few hours and then did some grocery shopping - although we are certainly not lacking for food due to the culinary skills of many friends and neighbors. Thanks to all for the food, the cards, the calls, flowers, emails, texts, and visits. Your kindness is truly overwhelming.
Tuesday, January 24, 2012
If you think things are bad
Sorry for the delayed update I know I have been delinquent. Having to get up every two hours to give Chris one of her meds has gotten me a little lazy about doing this - only one more night of it and we are done with that.
We have been home a few days now and are having some ups and downs. Sometimes Chris is comfortable and aside from the weird hairdo you wouldn't know anything happened, but more frequently she is very uncomfortable and struggles to keep her chin up. She continues to have intermittent headaches, although they have lessened in intensity as the Dr's said they would. As much, if not more, of a problem is that her body aches. She complains of pain in her hips, back and legs and it hurts to walk, sit, or just be. She is unsteady on her feet and needs support to walk, which is very slow and cautious. Pain meds help some but that is not the solution I am sure. My sense is that the underlying issue is lack of use, but I could be wrong.
We had an appointment on Monday with her regular general practitioner, just to get him up to speed and because he will be the one we go to over the long haul, but because the weather caused it to be pretty slick outside and because she's not so steady I thought it best to postpone. Now we see him on Thursday so we'll get his input. I also have a call in to the neurosurgeon to discuss it.
Upon discharge from the hospital we were given a list of hospital associated physical therapy locations, which is what I really think is needed most now, but two I called so far, after listening to her story, said they were not set up for neurotherepy, which I don't believe is really what we're after but it is probably better to have someone who is set up for it just in case. Finally I was referred to the therapy center at Fair Oaks Hospital, so I am waiting to hear back from them too. We continue to be thankful for everyones support and prayers and even though this might take awhile I am optimistic for a full recovery.
As bad as this was there is always someone worse off. A friend of mine told me his daughter-in-law, a mother of two kids, 8 and 10, was found on the floor of her home the other day having suffered from a blockage in a vessel in her brain. She was taken to the same ICU Chris was in, and is there now. For her the outcome does not look very promising so those of you who have prayed for us please pray for her and her family, they are really going to need it.
Sorry to end on a down note - been trying to keep upbeat.
More in a couple of days.
We have been home a few days now and are having some ups and downs. Sometimes Chris is comfortable and aside from the weird hairdo you wouldn't know anything happened, but more frequently she is very uncomfortable and struggles to keep her chin up. She continues to have intermittent headaches, although they have lessened in intensity as the Dr's said they would. As much, if not more, of a problem is that her body aches. She complains of pain in her hips, back and legs and it hurts to walk, sit, or just be. She is unsteady on her feet and needs support to walk, which is very slow and cautious. Pain meds help some but that is not the solution I am sure. My sense is that the underlying issue is lack of use, but I could be wrong.
We had an appointment on Monday with her regular general practitioner, just to get him up to speed and because he will be the one we go to over the long haul, but because the weather caused it to be pretty slick outside and because she's not so steady I thought it best to postpone. Now we see him on Thursday so we'll get his input. I also have a call in to the neurosurgeon to discuss it.
Upon discharge from the hospital we were given a list of hospital associated physical therapy locations, which is what I really think is needed most now, but two I called so far, after listening to her story, said they were not set up for neurotherepy, which I don't believe is really what we're after but it is probably better to have someone who is set up for it just in case. Finally I was referred to the therapy center at Fair Oaks Hospital, so I am waiting to hear back from them too. We continue to be thankful for everyones support and prayers and even though this might take awhile I am optimistic for a full recovery.
As bad as this was there is always someone worse off. A friend of mine told me his daughter-in-law, a mother of two kids, 8 and 10, was found on the floor of her home the other day having suffered from a blockage in a vessel in her brain. She was taken to the same ICU Chris was in, and is there now. For her the outcome does not look very promising so those of you who have prayed for us please pray for her and her family, they are really going to need it.
Sorry to end on a down note - been trying to keep upbeat.
More in a couple of days.
Thursday, January 19, 2012
Thursday Is Here
And we are OUT OF THERE!!! The transition to home was smooth and easy thanks to the hospital staff who are so on their toes. Chris is resting comfortably on our family room couch and we are getting settled back in.
The attending Dr wrote all of Chris' perscriptions and while she was getting ready to leave I was able to go and have them filled, so no having to have her wait in the car while I was at the pharmacy. She needs to continue take one of the pills (vasospasm fighter) every two hours around the clock for the next six days, so now instead of the nurse waking her I get to be the bad guy. Looks like not much sleep for a while.
And we have a list of things to do over the next several weeks; see our normal doc in one week to check in with him (the hospital doc had already called him though), see the neurosurgeon in two weeks, see the cardiologist in 3 weeks (following up on the afib she had previously), arrange for some physical therapy sessions. She's been told she needs 6-8 weeks of recovery time, then an evaluation of if she should take more, so the girls and I will have to be the enforcers of that.
So far today is a good day.
The attending Dr wrote all of Chris' perscriptions and while she was getting ready to leave I was able to go and have them filled, so no having to have her wait in the car while I was at the pharmacy. She needs to continue take one of the pills (vasospasm fighter) every two hours around the clock for the next six days, so now instead of the nurse waking her I get to be the bad guy. Looks like not much sleep for a while.
And we have a list of things to do over the next several weeks; see our normal doc in one week to check in with him (the hospital doc had already called him though), see the neurosurgeon in two weeks, see the cardiologist in 3 weeks (following up on the afib she had previously), arrange for some physical therapy sessions. She's been told she needs 6-8 weeks of recovery time, then an evaluation of if she should take more, so the girls and I will have to be the enforcers of that.
So far today is a good day.
Tuesday, January 17, 2012
Waiting for Thursday
Chris spent the first night out of the NSICU in a step down room and it didn't go all that well. Again she couldn't sleep, headaches, and said she was pretty miserable. When the surgeon, her main doc, made his daily rounds he felt some of that was to be expected and felt she was good enough to move out of the step down unit into a regular room, and start disconnecting her from most of these tubes. So we moved two doors down into a regular room. AND ...."if no problems arise you can go home Thursday", THURSDAY, like day after tomorrow!!!
Last night, in the regular room she slept better, with a chemistry assist. She did wake up and stay awake from about 3:30 AM on though. When Laura and I arrived just after her breakfast, the lack of sleep and residual effects of the sleep aid had her dozing heavily. A bit later, somewhat re-energized, and with help she was able to sit in the shower. First shower in almost two weeks. Really felt great getting clean and she did well for the rest of the day.
Dinner came and so did a visitor, our neighbor and good friend Pam. Chris was thrilled to see her. After dinner Chris kind of took a nosedive and the bad headache came back. This seems to be a pattern, feeling much worse in the evening. She goes from looking really great to miserable. Got an intermediate pain med because her every four hour med wasn't near due. Hope it works soon. Will have to bring this up with the doc tomorrow. Theresa is here with me this evening and is helping by giving her a massage.
Looking forward to Thursday.
Last night, in the regular room she slept better, with a chemistry assist. She did wake up and stay awake from about 3:30 AM on though. When Laura and I arrived just after her breakfast, the lack of sleep and residual effects of the sleep aid had her dozing heavily. A bit later, somewhat re-energized, and with help she was able to sit in the shower. First shower in almost two weeks. Really felt great getting clean and she did well for the rest of the day.
Dinner came and so did a visitor, our neighbor and good friend Pam. Chris was thrilled to see her. After dinner Chris kind of took a nosedive and the bad headache came back. This seems to be a pattern, feeling much worse in the evening. She goes from looking really great to miserable. Got an intermediate pain med because her every four hour med wasn't near due. Hope it works soon. Will have to bring this up with the doc tomorrow. Theresa is here with me this evening and is helping by giving her a massage.
Looking forward to Thursday.
Monday, January 16, 2012
Stepping Down
Yesterday brought good news. Around noon the Dr decided she was well enough to move out of the ICU!! Nothing happened all day though because there wasn't a room to move her to. Around 8 PM a nurse came in to say they finally had a room but they didn't actually move her until 10, into a shared room with a curtain separating the two beds. It was close to 11 by the time she was settled in. One step closer to going home.
Several days ago we were told when she made it to this "step down" room she'd be here for a week but we've since gotten indications it could be less. We hope so, she really wants out of here and to get home where she can relax and recover.
She had a hard time sleeping last night and texted me around 6 AM. When I arrived she was more comfortable than she had been all night and was just drifting off when the nurse came in, "wake up", to give her meds, take blood pressure, etc. That done she again started to doze, but wait, time for breakfast! Looks delicious. Falling asleep eating :-), poor kid. More later.
Several days ago we were told when she made it to this "step down" room she'd be here for a week but we've since gotten indications it could be less. We hope so, she really wants out of here and to get home where she can relax and recover.
She had a hard time sleeping last night and texted me around 6 AM. When I arrived she was more comfortable than she had been all night and was just drifting off when the nurse came in, "wake up", to give her meds, take blood pressure, etc. That done she again started to doze, but wait, time for breakfast! Looks delicious. Falling asleep eating :-), poor kid. More later.
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