Ben came by for a visit today and gave Paul hugs and kisses. It was so cute. He's gotten really clingy with my dad and with me and has been a little weary of Paul the past few days. I've been a little worried about how he's taking all this and worried that he's taken to my dad as if he's his dad, and while I know he still knows Paul is his daddy and he'll likely not remember any of this, I'm glad he had a positive visit today and am pleased that he still loves his daddy enough to give him kisses. :)
The doctor made Paul shave today (maybe that's why Ben warmed up to him...) to get ready for getting a new dialysis catheter put in tomorrow. His urine output has been great, at least 1500cc for today. They have been giving him Lasix, which is a strong diuretic to help kickstart his kidneys. I think that's contributing to the increase in output, but I also think the kidneys are doing most of it. Dr. Thomas was very pleased with his output this morning. They are still going to put the dialysis port in because they think he needs at least a few more treatments. His creatinine (the kidney function indicator) numbers are still high - if I remember correctly, this morning his creatinine was 8.1, normal is 1.3. When the kidneys are fully functioning, they'll take care of that creatinine on their own, but if it's still high, he'll need more dialysis to help.
On the movement front, Paul is doing good. By 4:30 today, it was clear to us that PT was not coming by - ugh! By 5:00 we talked to the nurse and he said he'd be right back to get him up and walking. By 6:00 we said screw it and got him up ourselves. :) Paul did GREAT! He did it all - got out of bed, stood up, got into the chair, stood up from the chair, walked a loop around the PCU, and got back in bed. There was one nurse here, just in case, when he was getting out of the chair, but she didn't have to help any. He was pretty sore afterwards, but this is a huge relief that he can do it all on his own. We will definitely be doing that more often. The movement up to the rehab floor depends on the dialysis catheter. He'll be put under again to have that done, so they'll need to monitor him in PCU for a day or so after that. If it's done Monday afternoon, it likely wouldn't be until Wednesday that he's moved up... blah. But now that we know he can move without the help of the too-busy-nurses, we can do our own rehab in the PCU.
Sunday, February 28, 2010
Saturday, February 27, 2010
Happy Birthday Janet!
Paul didn't have much of an appetite today so I don't think he cared much that we missed Janet's annual birthday dinner at Osaka, but I sure did!! We will definitely be going when this is all over. :) I hope you're having fun tonight, Janet!
Paul's blood count was low today so they gave him some more blood. I think the low blood count contributed to him not having an appetite - I know I feel crummy after I give a unit of blood and he was down 2 units. Hopefully he'll be better tomorrow after the blood finishes transfusing and he gets some good rest.
He walked this morning half way around the PCU. He only got to get up once because there was only one PT guy today. It's really frustrating that moving is the one thing that's holding Paul back now and we have to rely on others to make that happen. I didn't get to talk to Dr. Thomas today, but next time I do, I'm going to see why we can't move up to rehab. The website says they do 3 hrs/day of therapy up there, which I'm sure Paul would hate, but it's much needed.
His urine output is going great. I saw about 600cc in his bag while I was there today, I'm not sure what his official totals for the day were. A quick google search tells me that 1000-2000cc/day is normal. So, we're getting there. I'm saying a prayer that he gets there by Monday morning and maybe they'll decide he doesn't need that dialysis catheter put back in. His swelling is looking good too; his knees and ankles are no longer swollen. This makes it even more obvious how small his muscles have gotten, but it also makes it obvious that his kidneys are working...
Please continue to pray for Paul's muscle development and pain management. Once we get over those hurdles, we'll be bringing him home! :)
Paul's blood count was low today so they gave him some more blood. I think the low blood count contributed to him not having an appetite - I know I feel crummy after I give a unit of blood and he was down 2 units. Hopefully he'll be better tomorrow after the blood finishes transfusing and he gets some good rest.
He walked this morning half way around the PCU. He only got to get up once because there was only one PT guy today. It's really frustrating that moving is the one thing that's holding Paul back now and we have to rely on others to make that happen. I didn't get to talk to Dr. Thomas today, but next time I do, I'm going to see why we can't move up to rehab. The website says they do 3 hrs/day of therapy up there, which I'm sure Paul would hate, but it's much needed.
His urine output is going great. I saw about 600cc in his bag while I was there today, I'm not sure what his official totals for the day were. A quick google search tells me that 1000-2000cc/day is normal. So, we're getting there. I'm saying a prayer that he gets there by Monday morning and maybe they'll decide he doesn't need that dialysis catheter put back in. His swelling is looking good too; his knees and ankles are no longer swollen. This makes it even more obvious how small his muscles have gotten, but it also makes it obvious that his kidneys are working...
Please continue to pray for Paul's muscle development and pain management. Once we get over those hurdles, we'll be bringing him home! :)
Friday, February 26, 2010
Ups and Downs
Today showed more progress. Paul had dialysis this morning and has again doubled his urine output. :) He walked a half loop around the PCU and did a great job sitting in the chair. I wasn't there for that part, but he managed to recline and un-recline himself several times and adjust his legs when they weren't comfortable - that's good that he can do it on his own, I think I might be helping him too much...
Tonight, we noticed that he had somehow lost his dialysis port. It had been pulled out. I'm guessing it happened when he was getting in and out of the chair - the nurses put their arms under his and help him get up, I bet they inadvertently tugged on it. I am also wondering if it wasn't stitched in. I didn't notice any stitches anywhere like they had fallen out, so I wonder if they were ever there. Paul was pretty upset about it coming out - mostly because he doesn't want to have to get it put back in. The nephrologist said it shouldn't be a problem for him to skip dialysis until Monday so they'll get him in Monday morning to put a new port back in and then start on dialysis again. If his blood numbers take a dive before that, they'll do it sooner, but if all goes well - no dialysis this weekend - woohoo! I'm hoping we can capitalize on this time to get him out of bed and walking twice a day.
The doctor today said something about moving him up to the rehab floor next week. I'm going to ask tomorrow why we're waiting. If our goal is to move, shouldn't we work on that in the place most advantageous for that? And now that he won't be having dialysis this weekend, I don't see why we can't just move on up another floor now. We'll see how that goes.
Ben had his 15 month check-up today. He is perfect! He weighs 23.0 lbs, is 31" tall, and has a 47cm head. He's measuring right on track as he always has been. Dr. V said that's great because they usually see kids drop off the curve a bit when they start walking and being more active - must be all the cheetos and cookies he's been getting at G&Gs... :) He had been tugging on his ears yesterday and this morning, so I was worried about another ear infection, but she said they looked great. He's probably tugging because of his teeth coming in. The poor little guy had to get 3 shots AND have blood drawn. I didn't realize that the blood tests weren't common to all one year olds until I started telling people he had blood drawn. He was supposed to have it done at 12 mo, but he had an ear infection so they postponed until now. They are going to test hemoglobin levels, anemia, and lead. He ended up with bandages on both arms because they couldn't get a good vein the first time. He cried and cried, but he was a champ and was his happy normal self in no time.
I'm off to bed - I've stayed at the hospital tonight, hopefully this chair is comfortable enough to get some good rest. At least I'll know what it feels like to be the expectant dad sleeping in the hospital chair. :)
Tonight, we noticed that he had somehow lost his dialysis port. It had been pulled out. I'm guessing it happened when he was getting in and out of the chair - the nurses put their arms under his and help him get up, I bet they inadvertently tugged on it. I am also wondering if it wasn't stitched in. I didn't notice any stitches anywhere like they had fallen out, so I wonder if they were ever there. Paul was pretty upset about it coming out - mostly because he doesn't want to have to get it put back in. The nephrologist said it shouldn't be a problem for him to skip dialysis until Monday so they'll get him in Monday morning to put a new port back in and then start on dialysis again. If his blood numbers take a dive before that, they'll do it sooner, but if all goes well - no dialysis this weekend - woohoo! I'm hoping we can capitalize on this time to get him out of bed and walking twice a day.
The doctor today said something about moving him up to the rehab floor next week. I'm going to ask tomorrow why we're waiting. If our goal is to move, shouldn't we work on that in the place most advantageous for that? And now that he won't be having dialysis this weekend, I don't see why we can't just move on up another floor now. We'll see how that goes.
Ben had his 15 month check-up today. He is perfect! He weighs 23.0 lbs, is 31" tall, and has a 47cm head. He's measuring right on track as he always has been. Dr. V said that's great because they usually see kids drop off the curve a bit when they start walking and being more active - must be all the cheetos and cookies he's been getting at G&Gs... :) He had been tugging on his ears yesterday and this morning, so I was worried about another ear infection, but she said they looked great. He's probably tugging because of his teeth coming in. The poor little guy had to get 3 shots AND have blood drawn. I didn't realize that the blood tests weren't common to all one year olds until I started telling people he had blood drawn. He was supposed to have it done at 12 mo, but he had an ear infection so they postponed until now. They are going to test hemoglobin levels, anemia, and lead. He ended up with bandages on both arms because they couldn't get a good vein the first time. He cried and cried, but he was a champ and was his happy normal self in no time.
I'm off to bed - I've stayed at the hospital tonight, hopefully this chair is comfortable enough to get some good rest. At least I'll know what it feels like to be the expectant dad sleeping in the hospital chair. :)
Thursday, February 25, 2010
Movin' on up
Paul was moved out of the "unit" today. yippee!!! I think it's funny how they call it "the unit" instead of the ICU. anyhoo, he's been upgraded to the PCU - Progressive Care Unit. It's a transition unit between the ICU and the floor; the nursing care is a little better than just out on the floor, but not one-on-one like in the ICU. He's also not on all the monitors in the room which is nice. He actually has a wireless monitor, with leads on his chest and a receiver in his gown pocket. It's pretty cool to us nerdy folk. They only come a couple times a day to get his vitals, so he doesn't have to wear the blood pressure cuff all the time and no oxygen. :)
The best part? Visiting hours! I no longer have to call in and ask permission to see my husband, and I can stay during the dinner hours and help him eat - although he doesn't need much help anymore. He's eaten really well today. We figured out that it's the Healthy Shot super-concentrated protein drink that's making him nauseous, so he's not drinking that anymore. He's eaten considerable meals all day today and kept it all down. They are still watching how many calories he puts in and won't let him drink anything with no calories (water, tea...). He's holding the line in the fight for no more feeding tube!
The ultrasound of his gall bladder last night showed nothing. It was all normal, so they didn't do the hydascan today. The ID doctor said his WBC is a little down today, so they'll keep monitoring it and if it doesn't continue to come down in a couple days, we'll decide whether or not to do the scan.
His urine output has doubled since yesterday. It's still small amounts, but it makes me happy. If it continues to double, we might not have dialysis for so long; maybe only a month or two, instead of three... The doctor actually gave us an estimate on hospital discharge - that's a first. He thinks Paul will be in here another week. I'm thinking he would give himself a little wiggle room in giving us an estimate, so I'm interpretting that as less than a week until jail break.
Paul did another excellent job with walking today. The PT ladies are really taking baby steps. His baby steps today consisted of accomplishing walking on a different surface (carpeted hallway vs. tiled room), turning while walking, and walking farther than yesterday. He did it all and passed with flying colors. He only had to take one break, but then was right back up and charged right on through the next break they offered and marched right back into his room. Tomorrow, I think we're going to try to walk the loop around the PCU.
Ben was able to come visit today. He hasn't seen Paul in 16 days because he hasn't been allowed in the ICU and we didn't want him seeing his daddy hooked up to beeping machines and with tubes all over his face. He was excited to see him when we talked about it downstairs, but then he got a little shy and apprehensive once he actually saw him. Maybe it was the fact that he was lying in bed and Ben has associated daddy with the voice in the phone, but I think it was the fact that Paul hasn't shaved in 16 days and looks a little scruffy. He warmed up eventually after we gave him a happy meal toy and some balloons to play with. It really helped Paul to see that smiling face. I think he feels even more motivated now to get home quick.
Paul would love to see you if you'd like to visit. He's in room 350, unless he's strolling the halls or if they've wheeled him away to do dialysis on the other side of the hospital (usually in the mornings). I think the visiting hours of the hospital end at 8:30pm, so no late night parties... If it's during the day, just give me a call and I'll let you know if he's in dialysis or not - no need to waste a trip up here only to wait up to 4 hours!
The best part? Visiting hours! I no longer have to call in and ask permission to see my husband, and I can stay during the dinner hours and help him eat - although he doesn't need much help anymore. He's eaten really well today. We figured out that it's the Healthy Shot super-concentrated protein drink that's making him nauseous, so he's not drinking that anymore. He's eaten considerable meals all day today and kept it all down. They are still watching how many calories he puts in and won't let him drink anything with no calories (water, tea...). He's holding the line in the fight for no more feeding tube!
The ultrasound of his gall bladder last night showed nothing. It was all normal, so they didn't do the hydascan today. The ID doctor said his WBC is a little down today, so they'll keep monitoring it and if it doesn't continue to come down in a couple days, we'll decide whether or not to do the scan.
His urine output has doubled since yesterday. It's still small amounts, but it makes me happy. If it continues to double, we might not have dialysis for so long; maybe only a month or two, instead of three... The doctor actually gave us an estimate on hospital discharge - that's a first. He thinks Paul will be in here another week. I'm thinking he would give himself a little wiggle room in giving us an estimate, so I'm interpretting that as less than a week until jail break.
Paul did another excellent job with walking today. The PT ladies are really taking baby steps. His baby steps today consisted of accomplishing walking on a different surface (carpeted hallway vs. tiled room), turning while walking, and walking farther than yesterday. He did it all and passed with flying colors. He only had to take one break, but then was right back up and charged right on through the next break they offered and marched right back into his room. Tomorrow, I think we're going to try to walk the loop around the PCU.
Ben was able to come visit today. He hasn't seen Paul in 16 days because he hasn't been allowed in the ICU and we didn't want him seeing his daddy hooked up to beeping machines and with tubes all over his face. He was excited to see him when we talked about it downstairs, but then he got a little shy and apprehensive once he actually saw him. Maybe it was the fact that he was lying in bed and Ben has associated daddy with the voice in the phone, but I think it was the fact that Paul hasn't shaved in 16 days and looks a little scruffy. He warmed up eventually after we gave him a happy meal toy and some balloons to play with. It really helped Paul to see that smiling face. I think he feels even more motivated now to get home quick.
Paul would love to see you if you'd like to visit. He's in room 350, unless he's strolling the halls or if they've wheeled him away to do dialysis on the other side of the hospital (usually in the mornings). I think the visiting hours of the hospital end at 8:30pm, so no late night parties... If it's during the day, just give me a call and I'll let you know if he's in dialysis or not - no need to waste a trip up here only to wait up to 4 hours!
Wednesday, February 24, 2010
So So Proud
Paul took a little stroll today. :) He was able to get up from the bed on his own and then walked halfway down the ICU hallway (maybe 20 yds?). The nurse followed with the chair and he took a little break, then got himself out of the chair and walked all the way back to his room. He did such a good job, the nurse and I actually had to pick up our pace a bit to make sure the chair was right behind him, just in case. This is such a huge improvement, I am so proud! I knew he could do it, he just needed the push.
He's been trying to eat today too. He had some eggs for breakfast, but that didn't go too well. They came up along with the feeding tube. The doctor said he'd have to put that tube back in if he didn't start eating, so Paul called me and had me bring some Panera for lunch. He really does not want that tube back!
Unfortunately, lunch was cut short by the Infectious Disease doctor stopping by. He said that Paul's white blood cell counts were still a little elevated. With no other obvious signs of infection, they've thought all along that they are elevated because of the stress of the rhabdo and kidney failure. But, with everything else getting better and the WBC still elevated, he started wondering if it might be something else... He poked around on Paul's tummy and noticed tenderness around his gall bladder. Combined with the nausea, tiredness, lack of appetite, and dizziness, he's thinking he might have a gall bladder "attack" (i.e. stones). He's ordered an ultrasound for tonight and a hydascan for tomorrow morning. And now he can't eat for 4-6 hours before the ultrasound. We'll see what the results of those tests are to see if there's anything they need to do about that.
I'd say to pray that it's not a problem with his gall bladder, but it would almost be ok if it were. I think that fixing that would take away some problems and I'm starting to think that this might have been a long-term problem because Paul almost always seems to have trouble eating greasy and fatty foods. So, please just pray that they figure it out, whatever it is, and that Paul gets better as quickly as possible!
He's been trying to eat today too. He had some eggs for breakfast, but that didn't go too well. They came up along with the feeding tube. The doctor said he'd have to put that tube back in if he didn't start eating, so Paul called me and had me bring some Panera for lunch. He really does not want that tube back!
Unfortunately, lunch was cut short by the Infectious Disease doctor stopping by. He said that Paul's white blood cell counts were still a little elevated. With no other obvious signs of infection, they've thought all along that they are elevated because of the stress of the rhabdo and kidney failure. But, with everything else getting better and the WBC still elevated, he started wondering if it might be something else... He poked around on Paul's tummy and noticed tenderness around his gall bladder. Combined with the nausea, tiredness, lack of appetite, and dizziness, he's thinking he might have a gall bladder "attack" (i.e. stones). He's ordered an ultrasound for tonight and a hydascan for tomorrow morning. And now he can't eat for 4-6 hours before the ultrasound. We'll see what the results of those tests are to see if there's anything they need to do about that.
I'd say to pray that it's not a problem with his gall bladder, but it would almost be ok if it were. I think that fixing that would take away some problems and I'm starting to think that this might have been a long-term problem because Paul almost always seems to have trouble eating greasy and fatty foods. So, please just pray that they figure it out, whatever it is, and that Paul gets better as quickly as possible!
Tuesday, February 23, 2010
Woohoo!
Woohoo! Paul got himself out of the chair today!! I knew he could do it. He had a nurse on each arm to help him get up, but he was able to push up and support his weight and then walk a couple feet to the bed. Hooray!
I didn't post yesterday because it's just been more of the same, working on getting moving and eating regular food. He's been making good progress, he's been able to move his legs without my help and turn his upper body from side to side on his own. He still has a lot of muscle to build back up, but he's getting there.
The doctor told us that he might move him out of the ICU soon. Paul's a little apprehensive about that because he likes the nurses and gets one-on-one care. He's just not needing much critical care anymore, so it doesn't make sense to stay in the ICU. Plus visiting hours are better outside and I could spend the night and help him with exercises more often which should get him home faster.
All of his bloodwork is still looking good. The last CK reading I heard was 700 (yesterday). It's obviously an exponential curve and it's taking it's sweet time to get down to normal levels in the 200's. Everything else is looking good, so the doctor ordered dialysis today only to take off some fluid (rather than to also equalize electrolytes, etc as they've been doing). Paul has been pretty swollen from retaining fluids and they were just working on taking some of that fluid out. They took off 4.2L yesterday, and 0.9L today, but he's still swollen in some key areas. I guess all the swelling will really come down once his kidneys fully kick in.
They are starting to take him off the dilaudid and onto a less-strong pain medicine. This is good because I think he's starting to get dependent on the dilaudid and I don't think he needs it anymore. The dilaudid does such a number on his system and I think it might be messing with his appetite and the nauseous feeling when he tries to eat. Hopefully that will change with some new meds and his eating will pick up. He's resting now after what I think was his last shot of dilaudid, so I'm off to see Ben. :)
I didn't post yesterday because it's just been more of the same, working on getting moving and eating regular food. He's been making good progress, he's been able to move his legs without my help and turn his upper body from side to side on his own. He still has a lot of muscle to build back up, but he's getting there.
The doctor told us that he might move him out of the ICU soon. Paul's a little apprehensive about that because he likes the nurses and gets one-on-one care. He's just not needing much critical care anymore, so it doesn't make sense to stay in the ICU. Plus visiting hours are better outside and I could spend the night and help him with exercises more often which should get him home faster.
All of his bloodwork is still looking good. The last CK reading I heard was 700 (yesterday). It's obviously an exponential curve and it's taking it's sweet time to get down to normal levels in the 200's. Everything else is looking good, so the doctor ordered dialysis today only to take off some fluid (rather than to also equalize electrolytes, etc as they've been doing). Paul has been pretty swollen from retaining fluids and they were just working on taking some of that fluid out. They took off 4.2L yesterday, and 0.9L today, but he's still swollen in some key areas. I guess all the swelling will really come down once his kidneys fully kick in.
They are starting to take him off the dilaudid and onto a less-strong pain medicine. This is good because I think he's starting to get dependent on the dilaudid and I don't think he needs it anymore. The dilaudid does such a number on his system and I think it might be messing with his appetite and the nauseous feeling when he tries to eat. Hopefully that will change with some new meds and his eating will pick up. He's resting now after what I think was his last shot of dilaudid, so I'm off to see Ben. :)
Sunday, February 21, 2010
Thank You Lord!
Paul did great today. On top of all the physical pain, he's been having a mentally hard time with all of this and combined with the medicines, it's easy to fall into a bit of a depression. He's been spending most of his days just lying there thinking about it and spending quite a bit of time praying and bargaining with God. Tonight, I think he realized his prayers were being answered. He felt so good tonight and seems to have come out of whatever sad place he was in. Thank You Lord!
He sat up in the chair this afternoon for 2 hrs and 35 minutes. That is a great accomplishment! My parents came to visit while he was sitting up and I read some Percy Jackson & the Lightning Thief to him because reading himself is making him dizzy. He was sore afterwards, but when the nurses put him back in bed, they did some range of motion exercises on his legs. He actually said that it felt good and asked them to show me what to do so we could do them once an hour. After dinner tonight, I helped him do these exercises and while I could tell they hurt, it was a different hurt this time - he felt good doing them and felt like we were making progress. After that, he had some chicken broth (yay!) and we read some more Percy.
We still have a long way to go, but I think we're over the hump and I'm glad to have my hubby back from the brink of depression!!! :) Thank you all for the continued prayers - we can feel them working!
He sat up in the chair this afternoon for 2 hrs and 35 minutes. That is a great accomplishment! My parents came to visit while he was sitting up and I read some Percy Jackson & the Lightning Thief to him because reading himself is making him dizzy. He was sore afterwards, but when the nurses put him back in bed, they did some range of motion exercises on his legs. He actually said that it felt good and asked them to show me what to do so we could do them once an hour. After dinner tonight, I helped him do these exercises and while I could tell they hurt, it was a different hurt this time - he felt good doing them and felt like we were making progress. After that, he had some chicken broth (yay!) and we read some more Percy.
We still have a long way to go, but I think we're over the hump and I'm glad to have my hubby back from the brink of depression!!! :) Thank you all for the continued prayers - we can feel them working!
Saturday, February 20, 2010
Good day
Today was a good day. I was busy this morning selling cookies with my Girl Scouts. I left early to come see Paul, but Suzie and the girls stayed and sold them all!!! Hooray! I was really not looking forward to lugging the remainders in to work to sell them as I do almost every year.
Paul was still finishing up dialysis, so I met the Wilsons for lunch before meeting up with some other friends from church to visit with Paul. We had some time to just sit, relax, and play with Jack in the waiting room, which I really enjoyed. We really are so blessed to have such a wonderfully caring church family - you all are awesome!
By the time they all left, PT was working with Paul and they wouldn't let me in his room. I don't know why today was any different, but they wouldn't let me in... Anyhoo, they got him sitting up in the chair again where he sat for an hour. He didn't seem to be as sore today, yay! I had a good talk with his doctor tonight about seeing what we can do to move things along. Quite frankly, I'm not sure the PT people are worth much. They sit him up and leave, only once a day. Paul is willing and able to do more (at least twice a day... :), but he needs help to get there. So the doctor is going to look into PT coming twice a day or getting some resistance bands or something so that Paul can do more on his own to start building his muscles back up.
I left Paul a little early this afternoon to go spend some time with Ben. He is such a happy kid, it's hard to feel crummy around him. We played a bit, enjoyed a nap on the couch, and watched the US v Britain Olympic curling match. He is toddling all over the place now and is just happy as can be walking all over and getting into stuff. He has started pursing his lips together in a "ooh" sort of face lately. It is adorable. We'll have to get it on camera for you all.
Thank you all for the thoughts and comments about last night's post, they really mean a lot! We couldn't do all this without the help and support we're getting from all of you!!!
Paul was still finishing up dialysis, so I met the Wilsons for lunch before meeting up with some other friends from church to visit with Paul. We had some time to just sit, relax, and play with Jack in the waiting room, which I really enjoyed. We really are so blessed to have such a wonderfully caring church family - you all are awesome!
By the time they all left, PT was working with Paul and they wouldn't let me in his room. I don't know why today was any different, but they wouldn't let me in... Anyhoo, they got him sitting up in the chair again where he sat for an hour. He didn't seem to be as sore today, yay! I had a good talk with his doctor tonight about seeing what we can do to move things along. Quite frankly, I'm not sure the PT people are worth much. They sit him up and leave, only once a day. Paul is willing and able to do more (at least twice a day... :), but he needs help to get there. So the doctor is going to look into PT coming twice a day or getting some resistance bands or something so that Paul can do more on his own to start building his muscles back up.
I left Paul a little early this afternoon to go spend some time with Ben. He is such a happy kid, it's hard to feel crummy around him. We played a bit, enjoyed a nap on the couch, and watched the US v Britain Olympic curling match. He is toddling all over the place now and is just happy as can be walking all over and getting into stuff. He has started pursing his lips together in a "ooh" sort of face lately. It is adorable. We'll have to get it on camera for you all.
Thank you all for the thoughts and comments about last night's post, they really mean a lot! We couldn't do all this without the help and support we're getting from all of you!!!
Friday, February 19, 2010
The long road
I feel like reality slapped us in the face today. Everything has been going great and on the blood pressure/blood chemistry front, it still is going great. And yeah, his kidneys still don't work fully and he'll require dialysis for awhile, but we can handle the 3x/wk drive to FWB to get that done. Today we realized that getting Paul standing and walking is going to be pretty difficult, and I think that will be the long pole in the tent.
Paul sat up in the chair today. This was a huge feat and I am very proud of him. He had to sit up on the edge of his bed, get on his feet, shuffle and pivot, and sit down. It doesn't seem like much, but to a man who has had all his muscles disappear on him in the last week, it's an amazing accomplishment. He sat up for about 40 minutes while Suzie and I left to get him a smoothie. He talked to his mom and worked on some leg exercises while sitting in the chair. I think he might have overdone it a little and had a horrible time getting up out of the chair. I can't blame him because gravity was working against him standing up this time, but it was frustrating nonetheless. They had to get several nurses to come help him back into bed, after which he was completely exhausted. I was emotionally exhausted and felt defeated because I couldn't do anything to help him. All I could do was leave to get a shot of Ben-happiness.
I got Ben all settled in for a night with Aunt Janet before going back to the hospital. Ben didn't care much when I left and Janet said he was great, had fun playing in the bath, and went right to sleep like the perfect little boy he is. Paul was still really sore tonight, but we had a good talk about goals and expectations. We're going to try to take it a little slower but also do exercises more frequently. We've been waiting for physical therapy to get to his room to do anything besides simple leg exercises, but we learned today that the regular ICU nurses can help us just as much as the PT nurses. So, we're going to start with smaller steps every day (i.e. work on just sitting on the edge of the bed one day, then to standing, then to taking a few steps, then to sitting in the chair), but we'll also start doing this at our initiation, trying for 3 times a day and moving on to the next step when Paul's ready, instead of waiting for the one time a day that PT shows up (unannounced and at random times...).
I really had no real grasp on what this rhabdo really does to you until tonight. Now, Paul has never really been a real muscular guy, but I could always feel his muscles when he flexed. Tonight, he lifted his arm for me and there wasn't much left there besides a bunch of skin. The rhabdo has just broken all the muscles down all over his body. No wonder it's so difficult to put any weight on his legs. I don't want to get any of you down, Paul will recover from this and he will be on the floor playing with Ben again soon. It just may be a little longer than I was hoping for.
Please continue the prayers. They are felt and are very much appreciated. I know word of Paul's condition has spread into many, many circles and we feel so blessed to have so many family members, friends, coworkers, and even strangers praying for him. Thank you, thank you, thank you!
I don't know how many times I've read this verse, but it really stood out to me today and I felt the need to share it.
"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24
Paul sat up in the chair today. This was a huge feat and I am very proud of him. He had to sit up on the edge of his bed, get on his feet, shuffle and pivot, and sit down. It doesn't seem like much, but to a man who has had all his muscles disappear on him in the last week, it's an amazing accomplishment. He sat up for about 40 minutes while Suzie and I left to get him a smoothie. He talked to his mom and worked on some leg exercises while sitting in the chair. I think he might have overdone it a little and had a horrible time getting up out of the chair. I can't blame him because gravity was working against him standing up this time, but it was frustrating nonetheless. They had to get several nurses to come help him back into bed, after which he was completely exhausted. I was emotionally exhausted and felt defeated because I couldn't do anything to help him. All I could do was leave to get a shot of Ben-happiness.
I got Ben all settled in for a night with Aunt Janet before going back to the hospital. Ben didn't care much when I left and Janet said he was great, had fun playing in the bath, and went right to sleep like the perfect little boy he is. Paul was still really sore tonight, but we had a good talk about goals and expectations. We're going to try to take it a little slower but also do exercises more frequently. We've been waiting for physical therapy to get to his room to do anything besides simple leg exercises, but we learned today that the regular ICU nurses can help us just as much as the PT nurses. So, we're going to start with smaller steps every day (i.e. work on just sitting on the edge of the bed one day, then to standing, then to taking a few steps, then to sitting in the chair), but we'll also start doing this at our initiation, trying for 3 times a day and moving on to the next step when Paul's ready, instead of waiting for the one time a day that PT shows up (unannounced and at random times...).
I really had no real grasp on what this rhabdo really does to you until tonight. Now, Paul has never really been a real muscular guy, but I could always feel his muscles when he flexed. Tonight, he lifted his arm for me and there wasn't much left there besides a bunch of skin. The rhabdo has just broken all the muscles down all over his body. No wonder it's so difficult to put any weight on his legs. I don't want to get any of you down, Paul will recover from this and he will be on the floor playing with Ben again soon. It just may be a little longer than I was hoping for.
Please continue the prayers. They are felt and are very much appreciated. I know word of Paul's condition has spread into many, many circles and we feel so blessed to have so many family members, friends, coworkers, and even strangers praying for him. Thank you, thank you, thank you!
I don't know how many times I've read this verse, but it really stood out to me today and I felt the need to share it.
"Therefore I tell you, whatever you ask for in prayer, believe that you have received it, and it will be yours." Mark 11:24
Dave has a friend
Dave has a friend, Karen. She's letting me stay for dialysis too. :) Karen was the one who gave Paul his first treatment. She was on her way home from work with plans to have dinner with her bf when she was called back to give Paul a dialysis treatment that lasted until past midnight. God bless her. :)
Paul said he had a good night. The nurse fed him through the tube last night and he said it wasn't bad. He's resting now through dialysis. He's in a little pain but there's not much use in giving him any meds because the dialysis takes it away. He's been making tiny amounts of urine yesterday and today. Certainly not enough to flush his system, but it's a start!
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Thursday, February 18, 2010
Chicken'n'dumplings & bread pudding
Paul's surgery went well. He has a new tunnel catheter that sits under his skin right along his collar bone. It will tuck under his shirt and not be in the way of shaving and moving his head like the other one was. He also has a feeding tube to make sure he's getting nutrients. The nephrologist said he's allowed to have whatever he feels like eating in addition to what they'll give him down the tube, so there are Grandma's chicken'n'dumplings and Grandpa's bread pudding on their way here for dinner!
After the surgery, they wheeled him over to radiology for a CT scan before coming back up the rickety elevator. :) They wanted to get another image of his abdomen to make sure everything still looked good and that the feeding tube made it into his stomach correctly. Our nurse had the great idea to do it all with one trip up and down the elevator and made it work out just right.
We're back in his ICU room now. I think PT still has to stop by today, hopefully before I have to leave at 6. I'm rootin' for him to make it to the chair to sit up for a little while.
After the surgery, they wheeled him over to radiology for a CT scan before coming back up the rickety elevator. :) They wanted to get another image of his abdomen to make sure everything still looked good and that the feeding tube made it into his stomach correctly. Our nurse had the great idea to do it all with one trip up and down the elevator and made it work out just right.
We're back in his ICU room now. I think PT still has to stop by today, hopefully before I have to leave at 6. I'm rootin' for him to make it to the chair to sit up for a little while.
Here we are again
Here we are again in the surgery waiting room. They took Paul back just after 2:30 to insert a tunnel catheter for dialysis. It should take about an hour. Please pray for a smooth surgery.
Dave
I like Dave. He's a quiet man, a nice man, a good man. He's a DaVita dialysis nurse and he doesn't care if I'm here during dialysis. Hooray, nevermind going in to work today!
Surgery again, bleh...
Paul had an okay night. He's having a more permanent dialysis port put in today since he'll be going home on dialysis. They'll put him under conscious sedation, so he wasn't allowed anything to eat or drink after midnight. They will put the port in as well as a feeding tube. They just want to make sure he's getting enough nutrients and that's the best way, plus all the discomfort of having it put in can be done while he's under so it shouldn't bug him much.
He's about to get dialysis this morning, then the procedure will be this afternoon. I'll let you all know more when he's out of that. I think I'll go to work for a few hours this morning while dialysis chugs away.
Please pray that this mini-surgery goes well and he recovers from the conscious sedation well.
He's about to get dialysis this morning, then the procedure will be this afternoon. I'll let you all know more when he's out of that. I think I'll go to work for a few hours this morning while dialysis chugs away.
Please pray that this mini-surgery goes well and he recovers from the conscious sedation well.
Wednesday, February 17, 2010
He stands!
Paul stood, with the help of three PT ladies, three times today! He did great and we were quick enough to change his sheets while he stood, so we won't have to do that tonight. His legs are still pretty weak and he's pretty sore now, but he should have a quieter evening than the last two nights.
Dialysis hasn't been here yet which I'm surprised at, they must be busy...
Paul had a few visitors today. Some of his coworkers came by and brought this card. I just thought it was too funny, I had to share. :)
Delayed update from last night
I hope this works, I blogged to the wrong address last night, oops!
---------- Forwarded message ----------
From: "Paul Maconi, Jr." <paul@paulandkristy.com>
Date: Feb 16, 2010 10:36 PM
Subject:
To: <mo@paulandkristy.com>Paul is doing quite a bit better today. He is completely off the levophed now and his bp is holding steady at a decent pressure. Drs orders are that as long as his systolic pressure stays above 80, he doesn't need it. Its currently at 124/21 (59). They also took out his arterial line. It had come a little loose and wasn't giving accurate readings anymore. I think its a good sign that they didnt replace it - they're happy with bp readings every 15 min instead of constant. The levophed is the med that's been keeping his bp up and that the dr said was a really good sign when he's off it. Hooray!!! This drug also has some affect on his kidneys, so they might start kicking in now, but they still won't be fully functioning for awhile.
His CK numbers are down to 13,793, from 38,000 yesterday and his creatinine is down to 5.4, from 7.4 yesterday. Normal CK is 230, normal creatinine is 0.6-1.3. He's getting there...
His incision is looking good, we took the bandage off today. It was a lot like a jock strap and was really cutting into his legs, so hopefully that will eleviate one source of pain.
He had PT again today. I wasn't here, but Paul told me they did leg exercises and it wasn't as bad as yesterday.
He's eating better, still not eating a whole meal but he's trying hard. He's getting lots of the supplement drinks too.
Woohoo!
Paul's CK numbers are down 1200! Yay!!! That's a huge improvement from last night and I can tell that he's feeling a bit better. He's moving around a lot more and he made a considerable dent in his breakfast. They also took away his on-demand pain meds. He'll have to ask for it now and so far he hasn't asked for any. Dialysis and PT are on the agenda for this afternoon. A few of Paul's coworkers are on their way to visit, so I'll keep this short. More to come later.
Sent from my iPod
Monday, February 15, 2010
Physical Torture
Nancy was so sweet to keep Ben for a few hours today and to feed me lunch, too! Ben had lots of fun playing with Jack and I'm sure had a blast with all of his toys. He was tuckered out and fell asleep on the short ride home. Paul had 4 hrs of dialysis this morning, so I didn't get to come in until just after 2. Apparently, I was a little late because Paul actually called me to see where I was. :) The nurses threatened him with a feeding tube if he didn't start eating something this morning, so now he's drinking pretty well. He's had a couple apple juice/protein drinks and an Ensure-like nutrient drink formulated for dialysis patients. The PT (which stands for Physical Torture according to Uly, arguably Paul's favorite night nurse) girls came in this afternoon and got him moving a bit. They did some leg exercises with him and then got him sitting up on the side of the bed for a few minutes. We're still not getting him standing yet until he's off the Levophed completely. He's down to 5 mcg/min (he was at 14 at one point), so that's slowly coming down. Paul's CK numbers are down again, to 38,000 - still making progress there. Dr. Thomas said his creatinine numbers are higher, I didn't get an exact number, but they'll continue to work on dialyzing that out. I would guess that it would be higher since he didn't get dialysis yesterday.
Suzie came by to visit and brought me a Chick-fil-A milkshake. Thank you Suzie!!! I'm trying to drink it slowly and quietly because I'm sure Paul would love one right about now. I think that will be one of our first stops once we get out of here!
Sunday, February 14, 2010
Getting Better Every Day
CK numbers are 49,000, dropped from 78,000 - yay! They continue to decrease at a good rate, so hopefully they'll be down to the normal 230 range soon.
Not much else is going on, I just got back here after eating dinner with my parents and Ben. I think Ben's cutting another tooth because his mouth is really bugging him, he didn't want much of his dinner even though it was scrumptious! I got some really cute pictures of him playing with his Valentine's Day balloon. I'll have to get them uploaded here sometime.
Tomorrow is another round of dialysis. That should help his creatinine and CK numbers even more. See ya then!
Not much else is going on, I just got back here after eating dinner with my parents and Ben. I think Ben's cutting another tooth because his mouth is really bugging him, he didn't want much of his dinner even though it was scrumptious! I got some really cute pictures of him playing with his Valentine's Day balloon. I'll have to get them uploaded here sometime.
Tomorrow is another round of dialysis. That should help his creatinine and CK numbers even more. See ya then!
Liver gets the all clear
The GI doc just came by. The liver and the muscles release the same enzymes. He said the pattern that his enzymes have taken (one up, one up not as much) is more indicative of what you'd see in muscle breakdown. If the numbers were inverted, it would indicate liver damage. So , he's confident that the numbers indicate rhabdo and not liver damage. Just as we thought.
Now we're just waiting the PT guys. Jerry, our nurse, says it's a crapshoot on when they come. It's Sunday and they're contractor, not hospital employees...
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Double post
Paul's phone froze on me and I thought I lost that post. Sorry for the duplication. What I was saying about the ultrasound is she looked at right, left, tranverse, top, and bottom of the liver, gall bladder and one kidney. It all looked like fuzz to me, but I guess fuzz is good. :)
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Seeing the light through the trees
That's what Dr Jimenez said, he's not out of the woods yet but he can see the light through the trees. He's happy with Paul's numbers and is excited that the levophed weaning is going well. He said that when they tell us completely off that, it will be a really good sign.
He confirmed what we'd heard from Dr Senechal, that he'll likely go home on dialysis for a while. I can handle that, we just want to get him up and moving and able to go home.
Not much else is going on. He's had most of his apple juice and a little chicken broth. I had to lay the smack down and suggest that when he wants water (pretty often) that he should try to have
something else with some nutritional value first. He said I was mean, but he's complying.
We did get some bad news, Dr Jimenez will be off the next 5-6 days. I really like him, he takes the time to explain and doesn't hold anything back from me. The good news is that he says his partner is good too and he's our friends' neighbor, so we know where he lives. :)
We're gonna do lunch and wait for the GI doc, then I'll probably go home until tonight.
Sent from my iPod
Seeing the light through the trees
That's what Dr. Jimenez said, we're not out of woods yet, but he can see the light through the trees. He's happy with all the numbers and is excited that the levophed weanung is going well. He said that when they tell us he's off that, it will be a really good sign.
Ultrasound results came back and everything looked good - they must have special goggles or something, she looked at right, left, transverseI couldn't make anything out on the screen. Prenatal ultrasounds are easy compared to that.
Taking a "break"
Paul's potassium looks good, holding at normal. His CK, indicating the muscle deterioration is down quite a bit to 78,000, indicating that the rhabdo is slowing down. His creatinine is still high, but holding steady. The nephrologist is giving Paul a break on dialysis today because his numbers look good. Last night, his hemoglobin numbers were low, so there was slight concern about bleeding from his first dialysis port in his leg. They did a CT scan late last night and it came back clear so that's good. This morning his hemoglobin numbers are holding steady. His LFT numbers (liver function indicators) were a little elevated so they've called a GI doc in to analyze that and have also ordered a liver ultrasound to make sure everythings good there. They expect it to be fine, thinking the numbers are just high because of everything else going on, but they're checking it all to be on the safe side. They'll also continue to monitor those numbers daily.
While he gets a break with dialysis, we've been given homework. He needs to make a good effort at eating today. He's on a liquid diet, but can so far only take a sip every 5-10 min because his tummy is still waking up, but he's chugging away at it.
Our other bit of homework is to get him moving. The ortho guy came by again this morning and is pleased with things and said there isn't much more for him to do and that his muscles will regenerate themselves and he'll recover from that damage. He ordered PT to come by to move him around a little and teach me what I can do to help. We're also weaning him off the levophed that's keeping his bp up. He's reacting ok. The nurse wants to get him out of bed, but not until after he's weaned so he doesn't pass out on us.
Paul is recovering well from the surgical wounds. I got a look at Paul's incision and it's healing nicely and he said his cheek is not hurting.
I'll be sticking around for awhile, waiting for the PT folks and for the GI doc. But then I'll probably go spend some time with my other valentine. :)
Saturday, February 13, 2010
Resting
Not much new going on. The dialysis went well. They've changed pauls pain meds to on-demand so he has a little button to push. It puts a small amt in every ten min if he pushes the button. This is good but slow to start because he had to build up the amt in his system. He's resting well now and only pushing the button occasionally, so it must have caught up. They did this because the single shot every few hours was doing a number on his bp.
The dr wants him to start eating so he had some pudding. It didn't go so well. They gave him some antinausea meds and we'll start over with a liquid diet tonight.
I learned that it depends on the dialysis tech whether or not I'm allowed in here during it, so I'm going to keep on asking, hoping for a tech that will let me stay. :)
Update
As you can probably tell, I left Paul's phone with him last night at his request. I wasn't sure what he wanted it for, but I figured he'd try to post. :) Those numbers are actually pretty good. His bp is good and that heart rate has come down, it's been hovering at 120-130.
I just spoke with Dr. Thomas. He said his potassium is still looking good and his CK is coming down. His creatinine is still high though. I asked about the difference in these numbers.
The CK is a number indicating the amount of muscle breakdown. His were at 111,000 and today they are 100,000. Normal is 230-ish. We did some reading about this last night and found lots of info on marathon+ runners. They usually have high numbers (in the hundreds of thousands) because of what they put their muscles through, but they train for it, so their bodies can handle it, most of time. Rhabdo is a bit more common in that community though because of what they do.
Creatinine is a number that more indicates how the kidneys are functioning. I forget the number he told me, but it was in the single digits (5-6?) and is still high. I expect that will remain high until the rhabdo is done.
Dr. Thomas had been reading yesterday about rhabdo cases and saw one case where the patient developed compartment syndrome. This is where the rhabdo causes the space around the muscle to swell and essentially work as a tourniquet on the muscle - bad news. So he called an orthopedic guy in to check for that and he does not have it. The orthopedic had called to let me know late last night and Dr. Thomas said that he had been by again this morning and had the same conclusion. So thats good that we don't have to worry about that.
I have not gotten to the hospital yet today, I have to admit I slept in a little. Paul is on dialysis right now so I won't go in until 1 today, but then I should be able to stay all afternoon and hopefully get to see Dr. Thomas in person and maybe Dr. Jimenez this afternoon.
I just spoke with Dr. Thomas. He said his potassium is still looking good and his CK is coming down. His creatinine is still high though. I asked about the difference in these numbers.
The CK is a number indicating the amount of muscle breakdown. His were at 111,000 and today they are 100,000. Normal is 230-ish. We did some reading about this last night and found lots of info on marathon+ runners. They usually have high numbers (in the hundreds of thousands) because of what they put their muscles through, but they train for it, so their bodies can handle it, most of time. Rhabdo is a bit more common in that community though because of what they do.
Creatinine is a number that more indicates how the kidneys are functioning. I forget the number he told me, but it was in the single digits (5-6?) and is still high. I expect that will remain high until the rhabdo is done.
Dr. Thomas had been reading yesterday about rhabdo cases and saw one case where the patient developed compartment syndrome. This is where the rhabdo causes the space around the muscle to swell and essentially work as a tourniquet on the muscle - bad news. So he called an orthopedic guy in to check for that and he does not have it. The orthopedic had called to let me know late last night and Dr. Thomas said that he had been by again this morning and had the same conclusion. So thats good that we don't have to worry about that.
I have not gotten to the hospital yet today, I have to admit I slept in a little. Paul is on dialysis right now so I won't go in until 1 today, but then I should be able to stay all afternoon and hopefully get to see Dr. Thomas in person and maybe Dr. Jimenez this afternoon.
Friday, February 12, 2010
Bloodwork update
Potassium is down to normal levels, as expected. CK, CPK, creatinine (one of these days I'll learn the difference in these numbers) is still high but trending down. I expect they will remain high until the rhabdomyolysis is done running it's course.
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How this all started
I've come to realize that some people don't know how this all started, so here's the (hopefully) short story. I will warn you though that I'm not holding much back and most men will cringe while reading. You've been warned...
In October, Paul would occassionally lose a little pressure when peeing. In November he finally went to see our general doc. His bp was high and dr thought that the urination problem would likely clear up if his bp were lower, so he started him on lisinopril. January his peeing hadn't gotten any better and was occassionally painful. Dr referred him to the urologist. After an office visit and ultrasounds to check the bladder volume before and after "voiding" they learned he
was only voiding 2/3 of his urine. He suspected that he had a urethral stricture and wanted to scope Paul and administer a contrast dye to find out. Paul opted to have this done the following week under anestesia (understandable if you ask me...).
The following tuesday, dr was proven right. In the pic from the scope, about the size of a silver dollar, pauls urethra opening was about the size of a pinhead. The xray with the contrast dye revealed two strictures, close together, near his bladder. He couldn't fix it that day so he inserted a suprapubic catheter to relieve the pressure on the bladder.
The next step was to let the sp tube mature, let his urethra heal up, then do surgery in a few weeks. So on Wednesday, he performed a buccal mucosa urethroplasty where he took a graft out of his cheek about the size of a skinny post-it flag, maybe a little shorter, and grafted it over his urethra which had been cut open. All of this was happening from underneath with an incision between his scrotum and anus. (you were warned!!!)
From here you can read the blog from the last couple days. The summary is that they believe he developed a rare condition called rhabdomyolysis caused by some combination of a long surgery, an inverted, legs spread open position, and low bp during surgery.
I got to talk to our friend and doctor tonight who got to talk at length this morning with the nephrologist. He's been a dr for 30+ yrs and has seen this once in a patient who had a weird reaction to a med. It's definitely rare. He told me that Paul was pretty sick but that everyone expects a full recovery. He said the rhabdomyolysis takes about a week to run it's course, and then Pauls body can work on cleaning up the mess. It may take a few months for his kidneys to
fully recover so he'll likely be on dialysis a few times a week until then. He expects Paul to be in the hospital for about two weeks. Pauls drs haven't given us any timeframes, probably so we don't get any hopes dashed, but I think it's good to have a ballpark.
Wow, so that wasn't so short... The really short answer is that he will recover, but he has a long road ahead. Please continue the prayers they are felt and we are so thankful for them.
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Update
Paul just started his third round of dialysis. It took awhile to get a working machine, but they're off and running now. If his blood cooperates, they'll do 3.5 hrs. By the time that's done it will be shift change time so I won't go back until after Ben's bed time to see how dialysis went. I'm home again and will be able to go pick up Ben from day care, the highlight of my day. :)
Paul slept a lot today. They tried changing his pain meds to loratab because the dilaudid affects his bp so much but it didn't help his pain as much, so now he's back on dilaudid and it's working well.
To be continued...
Paul slept a lot today. They tried changing his pain meds to loratab because the dilaudid affects his bp so much but it didn't help his pain as much, so now he's back on dilaudid and it's working well.
To be continued...
Today's plan, if there can be a plan in the ICU...
Paul had his dialysis line moved this morning to his neck. I guess that's the ideal location and with the troubles they had with it yesterday in his thigh, they decided to move it. He's having a PICC line inserted now so they don't have to keep poking him. There's a bit if a delay now in getting his dialysis because a broken machine has created a backlog in the hospital. It will be another few hours before they can even start.
Paul is really tired this morning, but he is resting comfortably whenever they are not poking at him. His numbers are looking good, his bp and heart rate are close to normal when he's on his bp medicine. BP drops slightly when it runs out but he reacts well when it's replenished.
I also noticed a small victory as I was leaving last night - he peed! It's a small amount, but it's an excellent sign!! Hooray!
Thursday, February 11, 2010
Labs
Potassium is looking good. It was 7 last night, dropped to 6 after last night's dialysis, and is now 5.1 after today's dialysis. Normal is 3.5 - 5, so he's right on track. Hooray!!!
His creatinine levels are still at 4. Normal is 0.7 - 1.2. I *think* that they can get that number down with dialysis also but are focusing on getting the K down first. I'll confirm that with the doc in the morning.
I'm thinking I'll head home soon, Paul is doing really well, pain is under control and his heart rate and bp are looking ok. And Caitlin is watching him again tonight and she's great so I feel fine leaving him in her hands. :)
Rhabdomyolysis
http://en.m.wikipedia.org/wiki/Rhabdomyolysis?wasRedirected=true
The link above is to the wiki page on Rhabdmyolysis, the condition that Paul has of his muscles breaking down. There's a lot of medical jargon in there, some of it a little scary and doesn't apply to his situation, but if you're a nerd for information like me, I thought you'd like to read up on it. Thank you Dr Senechal for spelling it for me... I was getting nowhere searching for rabomylisis. :)
That boy is thick!
So we went back after lunch/dialysis to learn that dialysis hadn't occurred yet. They had some trouble getting it started because Paul's blood was too thick. It's normal to have thick blood, but it doesn't work so well for dialysis. They didn't want to give him Heparin to thin the blood because of his surgery, but they ended up giving him a little bit in controlled amounts to thin the blood out. He was finally hooked up to the dialysis machine and was able to go 2 hrs before clotting the machine up. That didn't all finish though until a little before 5, so today was full of waiting. blah.
When we finally got to go see him, the nurse had come out to get us. As we were walking back, he commented that Paul has quite the sense of humor! haha, I take that as a sign that he's feeling okay. The dilaudid is working beautifully, however one of the side effects is lowering the blood pressure, which is the complete opposite of what we want. They were installing an arterial line when we left. With that, they'll be able to have constant blood pressure readings without bugging Paul with the cuff. They kicked us out for that, and then it would be time for shift change, so we've come home for dinner and chub-chub time. :)
I'll go back tonight after shift change and stay as long as they'll let me. They should have bloodwork results by then so we can see how well the dialysis did today. I'll post more when I know more.
Thanks again for all the prayers - keep em coming, they are much appreciated!!!!
When we finally got to go see him, the nurse had come out to get us. As we were walking back, he commented that Paul has quite the sense of humor! haha, I take that as a sign that he's feeling okay. The dilaudid is working beautifully, however one of the side effects is lowering the blood pressure, which is the complete opposite of what we want. They were installing an arterial line when we left. With that, they'll be able to have constant blood pressure readings without bugging Paul with the cuff. They kicked us out for that, and then it would be time for shift change, so we've come home for dinner and chub-chub time. :)
I'll go back tonight after shift change and stay as long as they'll let me. They should have bloodwork results by then so we can see how well the dialysis did today. I'll post more when I know more.
Thanks again for all the prayers - keep em coming, they are much appreciated!!!!
Dilaudid
Dilaudid is the pain med that Paul is on. According to google it's 5x stronger than morphine.
They hit a snag with his dialysis earlier. His blood was too thick, they didn't want to give heparin because they need his incisions to heal. They've done something else and he is now on the machine. We're waiting for a chance to go see him, but it's likely they'll only let me in for now while he's on the machine.
Alotin
I'm thinking we've got the name of this drug wrong. If you search Alotin online, you only get a health foods store joint pain medication. hmm, we'll have to ask about it again this afternoon. Any doctor/nurse friends out there know what this is?
"That stuff's the $#!!"
Paul is doing a bit better now. The dialysis last night showed that it is working. His blood work came back and his potassium levels are lower than before. I'm told that normal levels are around 5-5.2, Paul's were 7 last night. The 3:30am bloodwork showed them at 6, so that's good. It's progress. I spoke to Dr. Jimenez this morning and he said it's looking good, he'll continue to be on dialysis once a day until his bloodwork comes back perfect and his kidneys are properly functioning (til he pees).
It turns out that the dialysis actually dialyzes some of the morphine out of his blood, so pain was pretty difficult to manage last night. Paul told us this morning that they had doubled his morphine dose and it worked for a bit, but starts to wear off quickly. We had the nurse call the doc who said he could have Alotin, which is apparently the drug that all the druggees want... Within 2 minutes, Paul said "That stuff's the $#!!" Musta been working. A few minutes later, he called the nurse over just to thank him for giving it to him. :) Hopefully this one works a bit longer and absorbs in his system before dialysis has a chance to take it out.
Todd, today's dialysis dude came in to set up the machine and gave Dad and I an explanation of how it works. It's really quite remarkable and has lots of safety features to make sure there are no clots or air bubbles, etc. Pretty cool machine. The day nurses are a bit more strict and wouldn't let us stay for dialysis, so we've come home. It takes about 3 hours, so we'll be back at 1:30 to check up on him and hang out until shift change again at 6.
I've heard some questions about how he's doing, if he's awake, etc. He is with it, he knows what's going on, talks to us and all that. He's just really dealing with a lot of muscle pain (from the muscles breaking down and from being held in an awkward position for so long). When I'm there, I do a lot of muscle massages and holding his legs up a bit to stretch his hamstrings and buttocks, it seems to be helping a bit. I imagine he's going to be extremely sore after all this is over and wouldn't be surprised if he was given some exercises to do.
I'll let you all know how this afternoon goes. I imagine it will be another 3-4 hours after dialysis until they get bloodwork results back showing how this round worked.
It turns out that the dialysis actually dialyzes some of the morphine out of his blood, so pain was pretty difficult to manage last night. Paul told us this morning that they had doubled his morphine dose and it worked for a bit, but starts to wear off quickly. We had the nurse call the doc who said he could have Alotin, which is apparently the drug that all the druggees want... Within 2 minutes, Paul said "That stuff's the $#!!" Musta been working. A few minutes later, he called the nurse over just to thank him for giving it to him. :) Hopefully this one works a bit longer and absorbs in his system before dialysis has a chance to take it out.
Todd, today's dialysis dude came in to set up the machine and gave Dad and I an explanation of how it works. It's really quite remarkable and has lots of safety features to make sure there are no clots or air bubbles, etc. Pretty cool machine. The day nurses are a bit more strict and wouldn't let us stay for dialysis, so we've come home. It takes about 3 hours, so we'll be back at 1:30 to check up on him and hang out until shift change again at 6.
I've heard some questions about how he's doing, if he's awake, etc. He is with it, he knows what's going on, talks to us and all that. He's just really dealing with a lot of muscle pain (from the muscles breaking down and from being held in an awkward position for so long). When I'm there, I do a lot of muscle massages and holding his legs up a bit to stretch his hamstrings and buttocks, it seems to be helping a bit. I imagine he's going to be extremely sore after all this is over and wouldn't be surprised if he was given some exercises to do.
I'll let you all know how this afternoon goes. I imagine it will be another 3-4 hours after dialysis until they get bloodwork results back showing how this round worked.
Wednesday, February 10, 2010
Dialysis :(
Yeah, I know what you're thinking, dialysis? Here's the run down as it was explained to me.
Paul was in the OR and under anesthesia for longer than expected. He was also in an inverted position with his legs spread open (pleasant image, eh?). They think that because he was in this position for so long, it stressed his muscles to break down a bit (just like they would in exercise) and releasing creatinine. So, they were breaking down for 5-6 hrs (?) and combined with the inverted position, the creatinine started to bind up in his kidneys. With the creatinine there, the kidneys can't process properly which led to potassium building up in his body, the high pulse and low blood pressure. They tried some meds to get it under control while they ran several blood tests. We had 100% dedicated help from Dr. Thomas (urologist & surgeon), Dr. DeCroos (anesthesiologist ), and Dr. Jimenez (nephrologist) all evening. They all agreed that they should put Paul on dialysis for a couple treatments to clean out the gunk and are 99.9% sure his kidneys will resume normal function once they are cleaned up. He'll be in here longer now because of this, but he could be out before the weekend's over.
So that's where we are now. Mom and I are waiting for Paul to get hooked up to the machine and then I can go back and hopefully be allowed to sleep in the ICU room tonight with Paul. He's in a lot of pain because he can't have more pain meds until his blood pressure comes up, which hopefully happens when the dialysis starts working.
Please continue the prayers, I'll post again in the morning if not sooner. Night!
Rough recovery
Paul is having a rough recovery. His pulse, potassium, and cretanine (sp?) are all high. This is likely because he was under for so long and at an inverted, head down position. They also have talked about some issue with his kidneys and have called in a nephrologist. He's getting meds to help and resting as best he can right now. Please pray that this all passes quickly and he has no lasting issues. I was allowed in recovery and am sitting with him now. I'll be here as long as they let me - how's that for real time updates? yay - I have a small victory here.
Finally done
Here's a better pic of the board. Until 20 min ago, it said "7:05 am In Operating Room." When we got here this morning, I was excited to see this technology, thinking it would be great to have real time updates. But it turned out to be more frustrating than anything.
Anyhoo, Paul is now out of surgery. Dr. Thomas said it was "technically difficult," so it took longer than expected. Considering the area he was working in and the delicacy of the materials, I can understand his caution, although he could've done better with letting us know what was going on and why it was taking so long. Oh well, it's over, he's waking up and should be moved upstairs to a room at which point I'll be able to see him.
We know lots of people have been praying for him, we can't thank you enough. Thank you, thank you, thank you!!!
Still waiting
So, we bugged the nurses for more info at 1:30 to find out that he's under and dr thomas is being meticulous and careful. We went to lunch and are now back to waiting. I hope he's done very soon and will post again then.
No news yet
It's hard to see from the picture, but Paul has now moved into the #1 spot on the list of surgeries because he's outlasted all those panzy 1-2 hr surgeries from this morning. He's been back there for almost six hrs. We got a call at ten saying that "positioning took longer than they thought, and he would be a bit longer." We are trying to be patient and are looking forward to lunch once Dr Thomas emerges.
In surgery
So, they wheeled him away just after 7. Gma and I had breakfast at
the hospital. It was just as good as I remember from our last stay
here when Ben was born. The surgery will take a few hours, doc said
to expect him to be done around 11-12. He also said there's a chance
he might not have to take the cheek graft (the buccal mucosa part), so
please pray that's the case because that's apparently the roughest
part of recovery. It all depends on how long the stricture actually
is. I'll post more when I know more.
the hospital. It was just as good as I remember from our last stay
here when Ben was born. The surgery will take a few hours, doc said
to expect him to be done around 11-12. He also said there's a chance
he might not have to take the cheek graft (the buccal mucosa part), so
please pray that's the case because that's apparently the roughest
part of recovery. It all depends on how long the stricture actually
is. I'll post more when I know more.
Sent from my iPod
Saturday, February 6, 2010
A Long Overdue Update
I’m not sure how many people follow this anymore, but I know there is one particular Ant who has been bugging us for an update for some time. So here goes.
Christmas was fun. We had all of the Cook kids home and Grandpa Graham came to visit the week after Christmas. We also got to spend some time with all of the local Domans. Ben still didn’t quite get the idea of Christmas, but he loved all the attention. We got him his own Little People Nativity set so he could wreak havoc on it and not my porcelain one! Instead of taking the pieces out of the tub, he decided to join them in the tub. :)
Here’s a video from Christmas morning. We got him a train set and my Dad built him a table. Tsunami Ben arrived pretty quickly and destroyed the track we’d set up, so we’ve put that away until he’s a little older. He loves driving cars and trains on the table though and it’s a good height to play with all the Little People toys he got too.
I really really enjoyed being home with him for almost 2 weeks. It gave me a nice taste of what it would be like to be a stay at home mom. Someday, I hope, we’ll make that happen.
Ben was a big help with decorating and getting ready for Christmas. He helped make sugar cookies…
and helped decorate the real tree at G&G Cooks.
We got to meet Ben’s newest cousin, Micah. He is adorable, as expected, because all Cook girls have beautiful babies! He’s pretty laid back too and, in general, a happy baby.
Ben had fun playing in his old baby toys. Although his face in this picture suggests otherwise, he really liked to climb in the bouncer.
Mom and Dad were happy to have all of their kids and grandkids together. Long ago, when we were all kids, Mom made us the best stockings in the world. Our names are cross-stitched and the rest is quilted. They are beautiful. As the family continues to grow, we’ve had to make more. Since everyone would be home this year, we had the ambitious goal of finishing all the “new” ones. Most of them had been started and just needed finishing (Ken, Sam, Ryan, Ben) and Micah’s hadn’t been started. Mom, Dad, and I worked hard and got them all done in record time. Dad even had to build a mantle-extension to hold them all. Micah holds the record for the youngest family member to have a stocking – his was done within 4 weeks of birth. They are beautiful!
Since we aren’t all together that often, we made sure to get a family picture, but I don’t have a copy of it. Someone send me a copy of it please… Here’s a good picture of G&G and the grandsons.
You’ll notice that Ben has his hands up in a “touchdown” position. We started teaching him this in Aug/Sept before the college season started. He loved sticking his hands up and getting our reaction. Well, over the break, we watched a lot of football and Ben learned to say “football” and “touchdown” and would say it anytime he saw a TV. It even got to the point where he would wake up in the morning, grab the remote, point it at the TV, and say “football.” Very cute! He also finds footballs everywhere we go. Of course, the stores right now have football displays all over, but the one that struck me was when we were in the doctor’s office. Ben had a bout of a stomach virus (we all ended up getting it, blah), so we were waiting patiently for the doc. I was showing him a picture of jungle animals on one wall. I was hoping he would say the animal’s names after me, but instead he said “football.” Sure enough, I turned around and saw a concussion awareness poster on the opposite wall. On the top of the poster, there was a group of sports players, maybe 6”x6” in the whole picture, with 8-10 people in it. Sure enough, one of the players was a football player holding a football. He is so perceptive, it amazes me sometimes. :) Here’s a video.
In the video, we’re trying to get him excited about basketball since the football season will be over tomorrow… He has started saying “basketball,” but he just doesn’t get as excited about it as he does about football.
For MLK weekend, we went to visit G&G Maconi and Astrid & Mike in Ocala. We had a nice visit with them. It just so happened that Uncle Les and Aunt Patti were in Orlando for a conference and my parents were there for an academic team tournament, so we all convened for dinner on Saturday at Downtown Disney. It was too short of a visit, but fun nonetheless. This technically was Ben’s first visit to Disney, but there’s still lots to show him there!
Checking out the fish at Rainforest Cafe.
and the dragon at the lego store.
Also in January, we all got a stomach virus. I guess Ben got it at school and it moved through the family. Thankfully, we didn’t all have it at the exact same time – we might not have survived that! We then learned that Paul has a urethral stricture. He’s scheduled for a buccal mucosa urethroplasty to get it all fixed this Wednesday. We pray that it goes well, that recovery is quick, and that the surgery fixes the problem for good.
Ben is finally getting more teeth. #9 started coming in last week, it’s one of his molars on the bottom right. We just noticed #10, top left, coming in yesterday. He didn’t fuss at all with the big molar coming in, but he’s been pretty fussy with the top one coming in. Hopefully they all come in quickly so his poor little mouth can feel better.
In case you haven’t gotten enough cuteness above, here are some more pictures and videos. :)
Ready to go to the store.
I love it when he sits like this, it seems so grown up to me.
Ben liked watching and helping Sam play games on his DS.
He loves hugging his new teddy from GGGG Cook.
Going for his first ride in the Grandpa wagon. Dad built this for Sam when he was about Ben’s age and now it’s passed down to Ben.
Ben sliding down his slide by himself.
Ben commanding his pirate ship and blowing kisses.
Ben was laughing hysterically at this fish-ball in the parmesan cheese container. Such silliness to be had with trash!
Ok, I think that’s a long enough post. I hope that will tide you over for awhile. We’ll try to be better about posting in the future. :)
Friday, February 5, 2010
This is a test…
…of the emergency BenCast (tm) system. I repeat, this is only a test.
BEEEeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeep…
Thursday, February 4, 2010
Wednesday, February 3, 2010
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