Well, I can't get Kevin to go for a walk anywhere, but he is showing lots of improvement. Though he walks like an old man (bent over at the shoulders, arms lagging behind his torso, and shuffling slow feet) he is doing more for himself at home. He gets his breakfast, drink and pills now. He came outside to the driveway to check the tread on the tires because he was sure I wasn't doing it right. (I wasn't.) He can play with the dogs for a bit and go up and down the stairs a few times in one day. And he hasn't vomited after too much exertion since last Monday! :)
Kevin is meeting some friends for lunch on Friday (me, too, I'm his driver) and I'm super excited for him to get out. He can't eat very much at once, but the social interaction will be great.
After that we're heading down to UHIC for a blood draw to check his levels and to have his surgeon check his drain. It's outputting hardly anything - yea! - so it will be backed out by an inch or so again. I hope we're nearing the end of this one. Kevin is really looking forward to the day he doesn't have ANYTHING sticking out of his body. I was thinking about that; he has had at least one device, usually more, hanging off him for 97 days as of today. That is every day since July 18, minus the five days he was home after his first discharge. I bet it will feel great to finally have his own body back.
Thursday, October 27, 2011
Monday, October 24, 2011
Getting Out
Kevin was able to come to church with us yesterday. It was tiring for him but well worth it. It takes a long time for him to get ready; shower, empty drain, change dressing on his tummy around the drain, and getting dressed easily take an hour for him. But everyone at church was so happy to see him and I and the girls were thrilled to have him with us. I brought my camera but I got busy and plus hated to ask him to pose when he was having difficulty getting around.
I'm really pushing Kevin to get out of the house and walk around a bit. It's so difficult for me to insist - I figure he knows if he's not up to it, and I don't want him to overdo it. However, he just can't increase his endurance if he doesn't get up and walk around. He does have to go to the Lab twice a week for blood draws, but I don't think that counts. I'm going to try to get him to go to the mall and walk today.
I'm really pushing Kevin to get out of the house and walk around a bit. It's so difficult for me to insist - I figure he knows if he's not up to it, and I don't want him to overdo it. However, he just can't increase his endurance if he doesn't get up and walk around. He does have to go to the Lab twice a week for blood draws, but I don't think that counts. I'm going to try to get him to go to the mall and walk today.
Tuesday, October 18, 2011
Disappointed
Spoke with a law firm on the phone today. EXTREMELY disappointed. I guess the fact that Kevin is expected to fully recover and has no permanent injuries is not good for a medical malpractice case. And since he is not fully recovered, they would like to wait until he has. Wait for what? They'll just say the same thing...not a case they want to take because no permanent injuries.
I would just have a meeting with Dr Renz and ask him if he could take care of our medical bills since he did say it was his fault, but the lady I spoke with said it isn't up to him, it's up to the insurance companies. And in her experience PCI thinks they will win every case so they take everything to court. Great.
I would just have a meeting with Dr Renz and ask him if he could take care of our medical bills since he did say it was his fault, but the lady I spoke with said it isn't up to him, it's up to the insurance companies. And in her experience PCI thinks they will win every case so they take everything to court. Great.
Sunday, October 16, 2011
Home Again
Kevin came home as expected Friday afternoon. His blood levels were not quite within the range they wanted yet, "supratherapeutic", but released him just the same. He couldn't wait to get out of there. While were we glad he was at UIHC, the hospital rooms are shared: double the beeps, double the nurse intrusions, double the health updates and medical conversations. It was extremely difficult for Kevin to get any rest.
That and the fact that he had to have his blood drawn every 6 hours to check Heparin levels. AND the fact that he is getting hard to draw blood from now; once they had to try four times over 45 minutes to get blood from him. Another time the nurses were sent back from the lab twice for more blood because the draw didn't have enough. The third time they finally got someone from the lab for the draw. Poor Kevin has bruises and little purple dots everywhere.
This blood clot thing has really worried Kevin. He told me he has high anxiety in bed before going to sleep because he's not sure he will wake up. While breathing is easier now, he still remembers the feeling of suffocating. I talked to him a lot about doing things that will distract him, like short visits from friends, taking drives, or anything else he can think of that's not health-oriented. I think it's time for another priesthood blessing.
That and the fact that he had to have his blood drawn every 6 hours to check Heparin levels. AND the fact that he is getting hard to draw blood from now; once they had to try four times over 45 minutes to get blood from him. Another time the nurses were sent back from the lab twice for more blood because the draw didn't have enough. The third time they finally got someone from the lab for the draw. Poor Kevin has bruises and little purple dots everywhere.
This blood clot thing has really worried Kevin. He told me he has high anxiety in bed before going to sleep because he's not sure he will wake up. While breathing is easier now, he still remembers the feeling of suffocating. I talked to him a lot about doing things that will distract him, like short visits from friends, taking drives, or anything else he can think of that's not health-oriented. I think it's time for another priesthood blessing.
Tuesday, October 11, 2011
Another Admittance
Kevin was admitted to U of I Hospitals today for a blood clot in his lungs. He was complaining of shortness of breath and a heavy chest so I called his nurse. The Dr himself called us back and said come in for a scan now. Kevin said he was surprised. Kevin, really. Not being able to breathe is not good. I was expecting it.
After the scan the Dr came in and said "I'm glad you're here. We found a problem." I was thinking pneumonia. Nope, P.E. That's Pulmonary Embolism for those not in the know.
It is a small clot and we caught it early. The Dr is guessing the PICC line, which was in him too long at 5 weeks, released a clot when it was pulled out. For those keeping track that's 4 misses for Cedar Rapids Drs. But, Kevin reminded me, they also saved his life. That was a group effort. One-on-one they're not so great.
A bit of information I didn't know; the blood clot will dissolve on it's own. The body has enzymes to take care of that. The drugs will keep the blood clot from growing and the blood thinners will keep another one from forming. Plus they are doing sonograms of Kevin's 4 extremities to make sure there are no other clots.
Now we get to learn the ropes at a whole other hospital. Yippee.
After the scan the Dr came in and said "I'm glad you're here. We found a problem." I was thinking pneumonia. Nope, P.E. That's Pulmonary Embolism for those not in the know.
It is a small clot and we caught it early. The Dr is guessing the PICC line, which was in him too long at 5 weeks, released a clot when it was pulled out. For those keeping track that's 4 misses for Cedar Rapids Drs. But, Kevin reminded me, they also saved his life. That was a group effort. One-on-one they're not so great.
A bit of information I didn't know; the blood clot will dissolve on it's own. The body has enzymes to take care of that. The drugs will keep the blood clot from growing and the blood thinners will keep another one from forming. Plus they are doing sonograms of Kevin's 4 extremities to make sure there are no other clots.
Now we get to learn the ropes at a whole other hospital. Yippee.
Monday, October 10, 2011
2nd Drain Out & Waiting
Kevin's 2nd drain wasn't doing too much - only traces of fluid coming out, so it was removed on Thursday, only 2 days after putting it in. At that appointment Kevin's PICC was also removed so we are done with infusions! I am sad to say good-bye to our home nurse, Rich. He was the most competent and knowledgeable nurse we've ever had. Based on him, I would recommend Care Pro Health and Home Infusions to anyone. The pharmacist called us often to check on Kevin, report his labs to us, update us with conversations he had with his Dr., etc. We felt in good hands with them.
While we are very happy to be done with infusions, oral antibiotics have a set of problems all their own. All 3 of them have the same side effects - nausea and loss of appetite. So Kevin is back to feeling sick to his stomach, not eating, and extremely weak. He came downstairs a few days ago and I worried he wasn't going to make it to his chair. Yeah, we're back to that. Great.
On the positive side, the remaining drain, the one that's been in for 5 weeks already, is producing less and less amounts of intestinal fluid. That is very good.
While we are very happy to be done with infusions, oral antibiotics have a set of problems all their own. All 3 of them have the same side effects - nausea and loss of appetite. So Kevin is back to feeling sick to his stomach, not eating, and extremely weak. He came downstairs a few days ago and I worried he wasn't going to make it to his chair. Yeah, we're back to that. Great.
On the positive side, the remaining drain, the one that's been in for 5 weeks already, is producing less and less amounts of intestinal fluid. That is very good.
Wednesday, October 5, 2011
2nd Drain Complete
Wow - what a GREAT visit to U of I Hospitals yesterday. Kevin, who has had some horrible drain procedures, said it was really very mild and hardly hurt. They were able to aspirate a bit of fluid and showed it to us - it looked like old blood; a possible hematoma they said. And NOT INFECTED! They were trying to grow stuff out of it in the incubator to make sure, but no infection under the microscope. Score!! So Kevin didn't have to be admitted.
And another glowing meeting with our new best friend, Dr Choi. His demeanor is just fabulous - super friendly, easy-going, funny, but super smart and confident and intent. He is changing all of Kevin's antibiotics to oral starting on Thursday. I cannot fathom what sleeping through the night will be like. We wanted him to pull Kevin's PICC line immediately, but he very wisely said that Kevin just had an invasive procedure, let's keep it to 1 today, and since he did just have an antibitotic infusion before the drain placement, he should have one after to keep down the possibility of infection. We have another appointment on Thursday for him to check the output of the drain that was just put in. If there is hardly any it will be removed. And the PICC will be taken out then.
So. On to the second drain. He said what is happening is that the drain our old surgeon put in was put in TOO DEEP and has been in TOO LONG. So you know how this whole drain thing started with just benign old blood coming out, but it has changed to nasty infected intestinal fluid? Well, it started out fine and all the old blood had drained out and is gone. But now since the tube is in too deep it is actually rubbing against and irritating Kevin's bowel (small intestine) and CAUSING the current fluid. So the drain is causing the drainage. I asked "Can I have that in writing?" AND, Kevin, seeing how deep the drain was when it was put in and on subsequent X-Rays in the hospital ASKED the surgeon in his office in a follow-up visit how deep the tube was and what it was intefering with. He said, Oh, it's in this deep, everything in there is soft, it's ok. Really.
So Dr Choi said removing the tube would create an abscess now so he has to back it out an inch at a time, wait two weeks, and back it out again. So we are looking at maybe 6 more weeks of this one.
Another interesting moment was when we revisited the TPN issue - not eating for 6 weeks and using IV nutrition. Our infectious disease Dr, who we saw on Friday, and who we will not be using anymore either, asked us if we would be doing that. We said no, our new surgeon has some different ideas. Then he said, Well, that is the standard therapy for healing the bowel. WELL. Dr Choi said "Yes, that is the textbook answer. But in this case I disagree with it." HALLELUJAH!! A Dr that has read the textbook but is smart enough to know when to deviate from it. We don't want Drs that say, well you have this symptom, so we have to do #1, then #2, then #3, because it says so right here. We want Drs that look at the whole picture and do what makes sense. And we knew that didn't make sense for Kevin.
And when the appointment was just about finished, Dr Choi asked us if wanted to see the scans. He went over to the computer monitor, pulled up Kevin's scans and showed us each one, pointing out the fluid pockets, the tube, the bowels, everything. We nodded, uh-huh, wow, interesting, look at that, neat. I asked Kevin on the way home if he could see anything. Nope. Me neither! Just blobs of grey. :)
And another glowing meeting with our new best friend, Dr Choi. His demeanor is just fabulous - super friendly, easy-going, funny, but super smart and confident and intent. He is changing all of Kevin's antibiotics to oral starting on Thursday. I cannot fathom what sleeping through the night will be like. We wanted him to pull Kevin's PICC line immediately, but he very wisely said that Kevin just had an invasive procedure, let's keep it to 1 today, and since he did just have an antibitotic infusion before the drain placement, he should have one after to keep down the possibility of infection. We have another appointment on Thursday for him to check the output of the drain that was just put in. If there is hardly any it will be removed. And the PICC will be taken out then.
So. On to the second drain. He said what is happening is that the drain our old surgeon put in was put in TOO DEEP and has been in TOO LONG. So you know how this whole drain thing started with just benign old blood coming out, but it has changed to nasty infected intestinal fluid? Well, it started out fine and all the old blood had drained out and is gone. But now since the tube is in too deep it is actually rubbing against and irritating Kevin's bowel (small intestine) and CAUSING the current fluid. So the drain is causing the drainage. I asked "Can I have that in writing?" AND, Kevin, seeing how deep the drain was when it was put in and on subsequent X-Rays in the hospital ASKED the surgeon in his office in a follow-up visit how deep the tube was and what it was intefering with. He said, Oh, it's in this deep, everything in there is soft, it's ok. Really.
So Dr Choi said removing the tube would create an abscess now so he has to back it out an inch at a time, wait two weeks, and back it out again. So we are looking at maybe 6 more weeks of this one.
Another interesting moment was when we revisited the TPN issue - not eating for 6 weeks and using IV nutrition. Our infectious disease Dr, who we saw on Friday, and who we will not be using anymore either, asked us if we would be doing that. We said no, our new surgeon has some different ideas. Then he said, Well, that is the standard therapy for healing the bowel. WELL. Dr Choi said "Yes, that is the textbook answer. But in this case I disagree with it." HALLELUJAH!! A Dr that has read the textbook but is smart enough to know when to deviate from it. We don't want Drs that say, well you have this symptom, so we have to do #1, then #2, then #3, because it says so right here. We want Drs that look at the whole picture and do what makes sense. And we knew that didn't make sense for Kevin.
And when the appointment was just about finished, Dr Choi asked us if wanted to see the scans. He went over to the computer monitor, pulled up Kevin's scans and showed us each one, pointing out the fluid pockets, the tube, the bowels, everything. We nodded, uh-huh, wow, interesting, look at that, neat. I asked Kevin on the way home if he could see anything. Nope. Me neither! Just blobs of grey. :)
Sunday, October 2, 2011
7th Drain
Kevin's 2nd drain (7th he will have had overall) will be placed on Tuesday. We are due at U of I Hospitals at 7:30am for him to drink contrast fluid to have another CT Scan. They want a recent scan before the drain is placed. Good thinking.
When Dr Choi called to discuss the drain with us, he said he would take care of the scheduling of this procedure himself because he wanted to choose who will do it, not just take the first available guy. Boy, do I like Dr Choi.
After they see the fluid they will determine what happens next. If it is clear = not infected, Kevin can come home with me. If it is infected (I fully expect it to be) they will keep Kevin overnight for observation. I hate to have him so far away, but if it's only for 1 night he'll be ok.
When Dr Choi called to discuss the drain with us, he said he would take care of the scheduling of this procedure himself because he wanted to choose who will do it, not just take the first available guy. Boy, do I like Dr Choi.
After they see the fluid they will determine what happens next. If it is clear = not infected, Kevin can come home with me. If it is infected (I fully expect it to be) they will keep Kevin overnight for observation. I hate to have him so far away, but if it's only for 1 night he'll be ok.
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