So turns out things weren't exactly back to "normal". Dave definitely caught a cold and yesterday morning started coughing pretty bad. It got worse throughout the day and last night neither of us slept very well because his cough sounds SO awful. I was on high alert. At one point he knocked something over and I thought it was his water, I went from mostly asleep to on my feet in half a second. Thankfully it wasn't anything important and I could lay back down.
The big problem with him coughing is that he can't. Yeah... he can't. Think about when you get sick and how much your abs hurt when you have been coughing a ton, he doesn't have the ab muscles to help his body cough things out. We've figured out a way (yay google) to assist him where I basically give him resistance on his stomach, below the rib cage, so his diaphragm has something to press against when he tries to cough. It seems to work fairly well but it's a bit of a production and it wears him out.
Normally a cold like this wouldn't be a big deal but in his case it could go from bad to BAD very quickly. We're mostly concerned about pneumonia. He's taking some meds and sucking on cough drops like candy and I got a vaporizer to help keep things loose. He's been sleeping a lot which is good since he didn't sleep much during the night. It's stressful on both of us.A hospice nurse is making an unscheduled visit tomorrow just to check on him which is good.
Owen is still sick, he missed pretty much all of last week of school. I sent him back on Thursday only to get a call around 1:15 from the school nurse saying he has a fever and please come get him. He's been laid up all week/weekend and has been putting himself to bed at 8. That's totally unheard of. I'm hoping he's well enough to go to school in the morning but part of me is so hesitant because his immune system is low and I don't want him catching MORE cooties from the other sickies at school. If he stays home tomorrow I think I should take him to the Dr although I hate to because they'll probably just say he's got a virus and send him back home.
It's been a rough week for me because I have been feeling a little under the weather myself although thankfully not as bad as the boys. Not only am I doing the normal stuff taking care of David but now Owen needs to be taken care of AND I don't have my helper around because he's sick in bed. I don't feel like I can afford to have a cranky day. We're kind of on lockdown around here, no germs in or out if we can help it.
Oh yeah, and David has treatment on wednesday. We're not sure what's going to happen if he still has this cough. We'll have to evaluate the risks/reward when it gets closer. Hopefully he's on the upswing and this will all be a distant memory soon enough.
Wash your hands and don't touch your faces!
Sunday, January 27, 2013
Friday, January 18, 2013
Back to "Normal"
David is feeling a little better. His throat is still a little sore and his stomach is still a little sensitive but mostly he's on the mend. His blood got tested again and his level is down to 2.3 so he starts back on Coumadin tomorrow but half as much as he was taking before, trying to keep his level where it is instead of spiking it back up.
As for the not passing urine problem that was an issue with the catheter that got taken care of. It basically wasn't completely draining his bladder which led to other issues. We're thankful for a couple of things... that he's already on anti-biotics which staved off a major infection because of that issue AND he has been saying he trained his whole life for such a thing to happen. By that he means that he used to drink a few (yes, few) large convenience store sodas every day and sometimes did the same on long car rides so his bladder was nice and stretched out and prepared for being full! HA!
Needless to say he's more comfortable overall. The tricky thing about paralysis is that he can't really FEEL that there's a problem but his body knows there's an issue and makes him feel out of sorts. He can't pinpoint the cause but he can indicate that there's definitely a problem.
Otherwise things have been pretty quiet around here. Olive hasn't really left David's bed since his treatment on Wednesday, she's so sweet.
Just wanted to drop a quick "all's quiet on the western front" note since I was a little stressed yesterday when I posted. So... All's quiet on the western front!
As for the not passing urine problem that was an issue with the catheter that got taken care of. It basically wasn't completely draining his bladder which led to other issues. We're thankful for a couple of things... that he's already on anti-biotics which staved off a major infection because of that issue AND he has been saying he trained his whole life for such a thing to happen. By that he means that he used to drink a few (yes, few) large convenience store sodas every day and sometimes did the same on long car rides so his bladder was nice and stretched out and prepared for being full! HA!
Needless to say he's more comfortable overall. The tricky thing about paralysis is that he can't really FEEL that there's a problem but his body knows there's an issue and makes him feel out of sorts. He can't pinpoint the cause but he can indicate that there's definitely a problem.
Otherwise things have been pretty quiet around here. Olive hasn't really left David's bed since his treatment on Wednesday, she's so sweet.
Just wanted to drop a quick "all's quiet on the western front" note since I was a little stressed yesterday when I posted. So... All's quiet on the western front!
Thursday, January 17, 2013
Feels Like A Pajama Day
David's having kind of a rough time of things right now. He's got a bit of a sore throat and a headache. I cannot fathom how his throat hurts, he's taking so many different pain meds it doesn't seem possible but there it is. I'm glad the pain meds don't usually knock him out too much but even if they did it would be ok, it's so awful to see him in pain, I would rather see him sleeping just because I know he isn't hurting in his sleep.
Yesterday they told us his protime (blood thinness) is at 5.4 YIKES! It's supposed to be between 2 and 2.5. When he got home from treatment he passed quite a bit of blood in a little bit of urine, not too surprising but quite unsettling. Actually he's not passing much urine at all compared to how much fluid he's had. No Bueno. His stomach is distended and he's not feeling well although thankfully he can't really FEEL anything but pressure in his stomach. We're wondering if the steroids are causing edema, that happened last time he was on steroids but his previous dose was larger than the one he's on now. All of this is "wait and see". I called to talk to the hospice nurse last night and she's coming to visit today but there really is not a whole lot they can do for him besides try to make him comfortable.
Remembering back to his time in the hospital it seems that there isn't a whole lot they can do for him there either so at least he gets to be uncomfortable at home rather than at a hospital where they do most of, if not all, the same stuff we can do for him at home.
Actually if we reflect back a year (why on earth do we do this to ourselves?) Today is the day before he lost feeling in his arms. So basically, a year ago tomorrow is the first day they didn't think he'd make it through the day. Yesterday a friend asked me how he was doing. I said he's not feeling great and they said, "Well considering they thought he was going to die a year ago I'd say he's doing pretty well" HA! TRUE! It's all in the perspective, right? It was good to get that reminder.
So today I'm cutting back his steroid to one dose instead of two (I decided, the nurse/doctor can tell me differently later) and his warfarin, and I'm going to stay in my pajamas until I absolutely have to get dressed because it's just one of those days.
Yesterday they told us his protime (blood thinness) is at 5.4 YIKES! It's supposed to be between 2 and 2.5. When he got home from treatment he passed quite a bit of blood in a little bit of urine, not too surprising but quite unsettling. Actually he's not passing much urine at all compared to how much fluid he's had. No Bueno. His stomach is distended and he's not feeling well although thankfully he can't really FEEL anything but pressure in his stomach. We're wondering if the steroids are causing edema, that happened last time he was on steroids but his previous dose was larger than the one he's on now. All of this is "wait and see". I called to talk to the hospice nurse last night and she's coming to visit today but there really is not a whole lot they can do for him besides try to make him comfortable.
Remembering back to his time in the hospital it seems that there isn't a whole lot they can do for him there either so at least he gets to be uncomfortable at home rather than at a hospital where they do most of, if not all, the same stuff we can do for him at home.
Actually if we reflect back a year (why on earth do we do this to ourselves?) Today is the day before he lost feeling in his arms. So basically, a year ago tomorrow is the first day they didn't think he'd make it through the day. Yesterday a friend asked me how he was doing. I said he's not feeling great and they said, "Well considering they thought he was going to die a year ago I'd say he's doing pretty well" HA! TRUE! It's all in the perspective, right? It was good to get that reminder.
So today I'm cutting back his steroid to one dose instead of two (I decided, the nurse/doctor can tell me differently later) and his warfarin, and I'm going to stay in my pajamas until I absolutely have to get dressed because it's just one of those days.
Saturday, January 5, 2013
Happy 2013!
Boy are we glad to say goodbye to 2012.
I know I haven't written in a while and there are a million reasons for that but most of all it's because we've been busy and emotional and the holidays were a lot more stressful than we anticipated. In fact, Christmas sort of snuck up on us because we were so wrapped up in the emotions of the whole thing so we inadvertently ordered some things that weren't going to arrive until after Christmas. Instead of worrying about it we decided we would celebrate Christmas in two shifts. On New Years Eve we celebrated Christmas part 2; Or as it's now known, "Second Christmas!" It actually relieved some of the stress and we figured since everything is different this year anyway we may as well roll with that.
Even though some of our traditions went to the wayside we couldn't let the season pass without taking our annual holiday picture. Usually we go up in the snow but we decided in front of the tree would be sufficient. I think it worked out just fine!
Christmas Day we got up early (by teen standards, glad he's not little and up super early!) and did our first Christmas, made breakfast together and spent some time in the living room together which NEVER happens. Later my Dad and Stepmom came over and brought dinner which was really nice. It was decided on kind of last minute but we're thankful they came over, it was a difficult day for everyone and we're glad we could be together. David was up in the chair pretty much all day which wore him out but he didn't complain at all because that's where he wanted to be. When he got back into bed he slept the rest of the night!
As for how David is doing... they've changed some of his meds around. He's now on a full time antibiotic to keep infection away, he's on steroids as a kind of last ditch attempt at relieving some of the pain in his shoulder and they've increased his morphine dose at night to relieve a little more pain to let him sleep better. We think all of those things are working to some degree. He can actually lift his left arm a bit now because the shoulder isn't in as much pain. I counted the other day and it averages out to about 26 pills a day. TWENTY-SIX! Yum.
We've also noticed some additional numbness in his right hand and arm all the way up to his shoulder. Why couldn't it be the other shoulder that went numb, the one that hurts from what we suspect is a rotator cuff problem. The right side is the bad side so it's not too big of a deal except that it's more pins and needles kind of feeling and it irritates him rather than hurting. He mentions it in passing maybe once a day and I notice him touching it a lot with his other hand, putting pressure on the sensitive areas. To most people that's nothing but coming from David that's a full on complaint!
We spent Christmas money from his parents on a new Blu-ray player and universal remote for the bedroom so he can watch movies a little easier than the old set-up where we had a computer hooked to the tv and the remote was cumbersome. The blu-ray does netflix and amazon prime and oodles of other online streaming resources and he found a remote app he can use on his phone! The man is set up with gadgets, just the way he likes it. Thanks Mom and Dad!
We expect to see David's parents here sometime this week for a visit, they're in Utah right now for the wedding of one of their Chinese grand daughters. Short story, they taught western culture/english at universities in china for a couple of years and some of their students moved here to go to school. These students are lovingly referred to as their Chinese grand children. David is still getting treatment although luckily this will be a week off so nicely timed!
Thanks for hanging in there for a whole year with us. Yesterday was the anniversary (that word doesn't seem right) of David's diagnosis. We've been wanting to post a "year in review" type of post with some thoughts from David (his family will laugh and expect about 2 sentences out of him) but as you can imagine we've been on a jumbled roller coaster of emotions lately and are having problems forming coherent thoughts. There's a lot of remembering what it was like a year ago, and that was no somewhere either of us really wants to go but it's kind of unavoidable. At least right now things are mostly status quo with minor setbacks and we're used to this new normal. It doesn't make it easy but it does make it predictable which can be somewhat comforting.
Happy New Year!
I know I haven't written in a while and there are a million reasons for that but most of all it's because we've been busy and emotional and the holidays were a lot more stressful than we anticipated. In fact, Christmas sort of snuck up on us because we were so wrapped up in the emotions of the whole thing so we inadvertently ordered some things that weren't going to arrive until after Christmas. Instead of worrying about it we decided we would celebrate Christmas in two shifts. On New Years Eve we celebrated Christmas part 2; Or as it's now known, "Second Christmas!" It actually relieved some of the stress and we figured since everything is different this year anyway we may as well roll with that.
Even though some of our traditions went to the wayside we couldn't let the season pass without taking our annual holiday picture. Usually we go up in the snow but we decided in front of the tree would be sufficient. I think it worked out just fine!
Christmas Day we got up early (by teen standards, glad he's not little and up super early!) and did our first Christmas, made breakfast together and spent some time in the living room together which NEVER happens. Later my Dad and Stepmom came over and brought dinner which was really nice. It was decided on kind of last minute but we're thankful they came over, it was a difficult day for everyone and we're glad we could be together. David was up in the chair pretty much all day which wore him out but he didn't complain at all because that's where he wanted to be. When he got back into bed he slept the rest of the night!
As for how David is doing... they've changed some of his meds around. He's now on a full time antibiotic to keep infection away, he's on steroids as a kind of last ditch attempt at relieving some of the pain in his shoulder and they've increased his morphine dose at night to relieve a little more pain to let him sleep better. We think all of those things are working to some degree. He can actually lift his left arm a bit now because the shoulder isn't in as much pain. I counted the other day and it averages out to about 26 pills a day. TWENTY-SIX! Yum.
We've also noticed some additional numbness in his right hand and arm all the way up to his shoulder. Why couldn't it be the other shoulder that went numb, the one that hurts from what we suspect is a rotator cuff problem. The right side is the bad side so it's not too big of a deal except that it's more pins and needles kind of feeling and it irritates him rather than hurting. He mentions it in passing maybe once a day and I notice him touching it a lot with his other hand, putting pressure on the sensitive areas. To most people that's nothing but coming from David that's a full on complaint!
We spent Christmas money from his parents on a new Blu-ray player and universal remote for the bedroom so he can watch movies a little easier than the old set-up where we had a computer hooked to the tv and the remote was cumbersome. The blu-ray does netflix and amazon prime and oodles of other online streaming resources and he found a remote app he can use on his phone! The man is set up with gadgets, just the way he likes it. Thanks Mom and Dad!
We expect to see David's parents here sometime this week for a visit, they're in Utah right now for the wedding of one of their Chinese grand daughters. Short story, they taught western culture/english at universities in china for a couple of years and some of their students moved here to go to school. These students are lovingly referred to as their Chinese grand children. David is still getting treatment although luckily this will be a week off so nicely timed!
Thanks for hanging in there for a whole year with us. Yesterday was the anniversary (that word doesn't seem right) of David's diagnosis. We've been wanting to post a "year in review" type of post with some thoughts from David (his family will laugh and expect about 2 sentences out of him) but as you can imagine we've been on a jumbled roller coaster of emotions lately and are having problems forming coherent thoughts. There's a lot of remembering what it was like a year ago, and that was no somewhere either of us really wants to go but it's kind of unavoidable. At least right now things are mostly status quo with minor setbacks and we're used to this new normal. It doesn't make it easy but it does make it predictable which can be somewhat comforting.
Happy New Year!
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