Bill did not have a good day yesterday, although the evening was a little better after I left. He said he had a terrible night again and was still in bed when I got there. He had eaten all of his breakfast, but he said he hurt all over, down to his toes.
When he got out of bed he could barely shuffle to his chair, and he was being supported by two pretty good sized men. The tremors in his hands were back and he could hardly hold his coffee cup, with both hands.
He also said that his mouth is very dry and his nose is stopped up. He doesn't have the sinus drainage he had before, but he also doesn't sound like someone with a stuffy nose. I started wondering if the Lasix is now drawing too much fluid and causing muscle cramps. When I asked that question, it was just kind of brushed aside.
When Dr. Threlkeld came in and Bill told him that he hurt all over, he immediately stopped the antibiotic that he had given as a precaution to any blood infection. Nothing had grown from the cultures and he had said that his medication was know for joint pain. His exact words were "we're not playing around with this". He said it should all be out of his system by this morning, so I hope he will feel better when I get there.
His nurse Bishop came in and said he checked with the pharmacy and that the other antibiotic could be causing the tremors. Mary-Rose and I had already checked on that and even though it isn't a major side-effect, it can cause tremors. This happened during his last stay also but it was kind of brushed off. It didn't happen when he was on the home infusions, but it was delivered over a 90 minute period then vs. 30 minutes in the hospital. So, since he's getting it in a shorter amount of time, it seems to me it's kind of overloading his system. And he gets it every 4 hours in hospital vs. every 8 hours at home. So, even though we know the cause of the tremors, it doesn't make it easier for Bill. It even makes it hard for him to do his word searches since it's hard to draw a straight line! Bishop did try running it over an hour instead of the 30 minutes, which he said could be done without changing the dosage or anything. It didn't seem to make any difference, but since he's still getting it, it may take awhile for those to subside.
Occupational and physical therapy both came in and worked with him for a bit. They also told him to do the exercises he had learned from Tammy. He is very weak when standing, but his O2 sats did not drop as low as they had been, only into the mid 80s instead of the mid 70s, and he recovered quickly. I think they switched him to a high flow cannula and turned his level up some, but I'm not sure on that.
Dr. Fox said that his x-rays had not changed, but I don't know how many they have done and if he was referring to the original x-ray when he was admitted and the one that was taken before he was moved to the unit, or that one and I think they took one Monday. He's the dr. who doesn't give much information and spends about 2 minutes in the room. I would much prefer Dr. Williams.
Cindy, the cardiology nurse practitioner, was going to get Bill some Tylenot PM to help him sleep last night and I hope he was able to rest. They switched his room about 10 last night. He said someone was coming in that needed his room more. There was nothing special about his room and the only thing I can think of is that they want to keep the sickest ones together. Anyway he called and gave me the room number so I wouldn't barge in on a new patient this moring!
Bill did say yesterday that even though he wants to come home, he knows that he can't in the condition he's in because I can't take care of him the way he is. I was glad to hear him say that instead of me having to remind him.
I did start to see a little "roid rage" yesterday afternoon, about being tethered to his chair. I told him he couldn't get up and walk even if he wanted to without help so it didn't do any good to gripe about it. I also told him right at the beginning of his little rant that if he was going to do that I was going home. So he stopped and only grumbled periodically.
I have wondered, since he is so weak, if he would not benefit from in-patient therapy after he is discharged, instead of home health. Kevin had told us that Medicare would probably not re-certify him for in home since he gets so far and then has a set-back. Their argument would be that he has been give then basics and came do them on his own. But, I wondered if they would cover in-patient where he could get the daily more intense coverage. We started to talk about it and then everyone started coming in so we stopped. But, maybe we-ll revisit that subject today after I get there.
Today we're supposed to get 2+ inches of rain, including some storms. They are supposed to arrive about the time I'll be heading home, so it won't be a fun drive. Most of the towns around had changed Halloween to last night, but ours didn't. Said it would take the city council to make the change. How ridiculous, to endanger the lives of children instead of calling a special meeting, that could probably be done as a conference call, with the newspaper brought in. Maybe most parents took their kids downtown for the merchant trick or treating. It was changed to last night. We usually don't get any kids anyway, or we haven't for the past couple of years. I just am not looking forward to the drive home in the rain.
So, that's it. After not much happening over the week-end, things were a little busier yesterday. There is still no time being talked about for discharge, which is good since I don't believe he's recovered enough, not counting the fact that he's so weak. I've read through my notes and have relayed everything I had written down, so I think it was all covered. See you tomorrow!
Wednesday, October 31, 2018
Tuesday, October 30, 2018
For those of you who were wondering why there was no post yesterday, we have arrived at the point in his recovery that nothing important is really happening. Sunday I left early to take care of some things at home. I woke up to no heat, so needed to arrange for a repairman to come and then to pick up all the cat toys and at least wash what few dishes there were sitting around.
I had left Bill's room for 10 minutes to get some lunch...and missed the only Dr. who came in all day up to that point. He said yesterday that there weren't any other drs. in.
Bill is feeling better and wants to come home, but he is still de-sating when he stands. Yesterday he stood and pivoted to get to his bedside commode and then repeated the process after he was finished and his oxygen level dropped to 75. He still recovers after a few minutes and some reminders to breathe through his nose, but if he can't take a single real step, he doesn't need to be home. He's a little grumpy from all the steroids, and he said that his new bed is not comfortable. They have gone to the type of beds that change pressure points automatically to prevent bed sores and he just couldn't find a good position. Yesterday afternoon they put an egg carton mattress on top of it, so maybe that gave him a better night.
He was also telling me about a woman in red who came in after I left and got mad at him for getting out of bed (he had been in his chair most of the day) and wrote a note about it for me, but he dropped it and then couldn't find it. I looked under all the furniture and there was nothing, so I think that despite his claims of not sleeping for more than 20 minutes, he was actually dreaming.
Dr. Threlkeld did say yesterday that we are still on the right track as far as antibiotics go and another chest xray was done, but I don't know what it showed. I don't know if any other drs. came in before I left yesterday.
The heat is fixed, our neighbor Joe agreed to let the repairman in and $300 later it's working and there shouldn't be any other problems. It was all due to a rusty exhaust pipe. Pieces of rust had broken off and fallen into the motor he replaced last year (for the same reason). It didn't have to be replaced, but he did replace the pipe. It is so nice to have people you can count on. The repairman goes to church with Emily and Joe is always ready to help. Anyway, I came home to a warm house, even though it was in the low 70s yesterday.
It's supposed to rain starting tomorrow and we are supposed to get about 2 inches before it's all over. That's probably when they will decided to discharge Bill...in the middle of a thunderstorm!
I would like to hear from pulmonology about a plan for the dropping O2 levels an what can be done about them...if anything. If this is going to be the new normal, we will have to do some re-arranging of furniture to accommodate Bill being in his little wheelchair most of the time to move through the house. But, that could yet be farther down the road, or not im the plan at all. But it would be nice to know.
So, we're in a recovery holding pattern. I have taken his suitcase and oxygen to the hospital in case they decide they are done with him, but I still don't anticipate that. If they decide to discharge, I'll have to tell them that I can't care for him like he is, which is true. I can do lots of things, and will do lots of things concerning personal care, but I can't lift him easily, and by that I mean assist him in standing. I know I can't lift him, especially if he should fall. I can always apply for Aid and Attendance through the VA to get extra money to help pay for in home help if necessary, and it may come to that. We'll just have to see.
So, that's where we are. Maybe some doctors with some answers will come in today while I'm there. I've been having to leave a little earlier than usual since it's getting dark earlier now. I don't drive well at night anymore, as happens to most older people, and the long drive is starting to wear on me some.
This post is probably concerning to mom, but I'm fine, Mom, just a little tired. Went to bed early last night and I am eating and sleeping. It would be nice, I admit, to get up and not have to go anywhere! But, that's not how it is, and as I told a gentleman Saturday who has been in the transplant unit with his cousin for more than a month, "He's my husband, this is my job".
There you have it, for the latest wrap-up. Hopefully there will be more news in the next post.
I had left Bill's room for 10 minutes to get some lunch...and missed the only Dr. who came in all day up to that point. He said yesterday that there weren't any other drs. in.
Bill is feeling better and wants to come home, but he is still de-sating when he stands. Yesterday he stood and pivoted to get to his bedside commode and then repeated the process after he was finished and his oxygen level dropped to 75. He still recovers after a few minutes and some reminders to breathe through his nose, but if he can't take a single real step, he doesn't need to be home. He's a little grumpy from all the steroids, and he said that his new bed is not comfortable. They have gone to the type of beds that change pressure points automatically to prevent bed sores and he just couldn't find a good position. Yesterday afternoon they put an egg carton mattress on top of it, so maybe that gave him a better night.
He was also telling me about a woman in red who came in after I left and got mad at him for getting out of bed (he had been in his chair most of the day) and wrote a note about it for me, but he dropped it and then couldn't find it. I looked under all the furniture and there was nothing, so I think that despite his claims of not sleeping for more than 20 minutes, he was actually dreaming.
Dr. Threlkeld did say yesterday that we are still on the right track as far as antibiotics go and another chest xray was done, but I don't know what it showed. I don't know if any other drs. came in before I left yesterday.
The heat is fixed, our neighbor Joe agreed to let the repairman in and $300 later it's working and there shouldn't be any other problems. It was all due to a rusty exhaust pipe. Pieces of rust had broken off and fallen into the motor he replaced last year (for the same reason). It didn't have to be replaced, but he did replace the pipe. It is so nice to have people you can count on. The repairman goes to church with Emily and Joe is always ready to help. Anyway, I came home to a warm house, even though it was in the low 70s yesterday.
It's supposed to rain starting tomorrow and we are supposed to get about 2 inches before it's all over. That's probably when they will decided to discharge Bill...in the middle of a thunderstorm!
I would like to hear from pulmonology about a plan for the dropping O2 levels an what can be done about them...if anything. If this is going to be the new normal, we will have to do some re-arranging of furniture to accommodate Bill being in his little wheelchair most of the time to move through the house. But, that could yet be farther down the road, or not im the plan at all. But it would be nice to know.
So, we're in a recovery holding pattern. I have taken his suitcase and oxygen to the hospital in case they decide they are done with him, but I still don't anticipate that. If they decide to discharge, I'll have to tell them that I can't care for him like he is, which is true. I can do lots of things, and will do lots of things concerning personal care, but I can't lift him easily, and by that I mean assist him in standing. I know I can't lift him, especially if he should fall. I can always apply for Aid and Attendance through the VA to get extra money to help pay for in home help if necessary, and it may come to that. We'll just have to see.
So, that's where we are. Maybe some doctors with some answers will come in today while I'm there. I've been having to leave a little earlier than usual since it's getting dark earlier now. I don't drive well at night anymore, as happens to most older people, and the long drive is starting to wear on me some.
This post is probably concerning to mom, but I'm fine, Mom, just a little tired. Went to bed early last night and I am eating and sleeping. It would be nice, I admit, to get up and not have to go anywhere! But, that's not how it is, and as I told a gentleman Saturday who has been in the transplant unit with his cousin for more than a month, "He's my husband, this is my job".
There you have it, for the latest wrap-up. Hopefully there will be more news in the next post.
Sunday, October 28, 2018
Bill was much better yesterday, I could tell by looking at his face when I got there. I was later yesterday because I had an errand to take care of first and there was a detour that took a little longer. He was having a breathing treatment and they had brought his lunch. But, his color was better and his numbers were great!
Ryan and Amanda and the baby were there too (we met on the highway so they could follow me) and we had fun playing with him and a visit with them.
I only got to see one doctor and that was Dr. Edwards the head transplant cardiologist, and he said there were absolutely no signs of rejection and wanted to know who told us that. When I said it was our pulmonologist, he just got an incredulous look on his face. He did say that the left side of the heart is a little stiff but that's normal this far out from transplant and the right side was enlarged a little from higher pulmonary pressures from the pneumonia. Bill's left side has always been stiff from all the problems during the transplant and the pressures have come down.
His O2 sats were staying in the upper 90s, even breathing through his mouth, although whenever he moves, even from a wheelchair to a chair or the chair to the commode, they are dropping into the 70s again. That still hasn't been addressed so I don't know what the plan will be, if there will even be a plan.
The best news is that he was moved back to the step-down unit right after dinner last night. I stayed until they got him settled in and then headed home. I hate driving in the dark and now with it getting dark earlier, it's tougher. But, traffic was light for the most part.
Bill did tell me that a doctor came in before I got there and "whatever it was has cleared". So, I don't know if it was Dr. Williams who wanted to look at the chest xray before he was moved the other day or someone else. I did see Dr. Williams in the unit all afternoon, so I'm assuming it was him. That's the drawback about going later even on a week-end, you take a chance on missing doctors.
The unit was a hive of activity as they were preparing for a transplant and it was very interesting to watch. There was a lot of activity in 2 rooms and I'm beginning to think that the patient that I heard paramedics say was from Jonesboro was actually the donor and the patient in the room next to Bill's was the recipient. As we were moving to the other unit we passed the conference room and there was a young couple in there, could have been married, could have been siblings, and I really wanted to stop and talk to them. But, I didn't, I just said a prayer for them, whether they were from donor or recipient family. I just know it was going to be the longest night of their lives!
So, that's the update. I woke up to a cold house this morning. The heat has gone out again. I changed the batteries in the thermostat and that didn't help so I guess I'll see if Bryan can come over this evening and check it out. It's supposed to be warm today, in the mid 70s so it won't be too bad and then get cold. I'll have to make some arrangements to get someone here to fix it, if it's something Bryan can't do. Always something!
I think I'm going to get my tail moving and head to the hospital earlier this morning since I'll have to come home earlier to see about the heat. I'll keep you posted!
Ryan and Amanda and the baby were there too (we met on the highway so they could follow me) and we had fun playing with him and a visit with them.
I only got to see one doctor and that was Dr. Edwards the head transplant cardiologist, and he said there were absolutely no signs of rejection and wanted to know who told us that. When I said it was our pulmonologist, he just got an incredulous look on his face. He did say that the left side of the heart is a little stiff but that's normal this far out from transplant and the right side was enlarged a little from higher pulmonary pressures from the pneumonia. Bill's left side has always been stiff from all the problems during the transplant and the pressures have come down.
His O2 sats were staying in the upper 90s, even breathing through his mouth, although whenever he moves, even from a wheelchair to a chair or the chair to the commode, they are dropping into the 70s again. That still hasn't been addressed so I don't know what the plan will be, if there will even be a plan.
The best news is that he was moved back to the step-down unit right after dinner last night. I stayed until they got him settled in and then headed home. I hate driving in the dark and now with it getting dark earlier, it's tougher. But, traffic was light for the most part.
Bill did tell me that a doctor came in before I got there and "whatever it was has cleared". So, I don't know if it was Dr. Williams who wanted to look at the chest xray before he was moved the other day or someone else. I did see Dr. Williams in the unit all afternoon, so I'm assuming it was him. That's the drawback about going later even on a week-end, you take a chance on missing doctors.
The unit was a hive of activity as they were preparing for a transplant and it was very interesting to watch. There was a lot of activity in 2 rooms and I'm beginning to think that the patient that I heard paramedics say was from Jonesboro was actually the donor and the patient in the room next to Bill's was the recipient. As we were moving to the other unit we passed the conference room and there was a young couple in there, could have been married, could have been siblings, and I really wanted to stop and talk to them. But, I didn't, I just said a prayer for them, whether they were from donor or recipient family. I just know it was going to be the longest night of their lives!
So, that's the update. I woke up to a cold house this morning. The heat has gone out again. I changed the batteries in the thermostat and that didn't help so I guess I'll see if Bryan can come over this evening and check it out. It's supposed to be warm today, in the mid 70s so it won't be too bad and then get cold. I'll have to make some arrangements to get someone here to fix it, if it's something Bryan can't do. Always something!
I think I'm going to get my tail moving and head to the hospital earlier this morning since I'll have to come home earlier to see about the heat. I'll keep you posted!
Saturday, October 27, 2018
It was another eventful day, although not in a good way. Bill was not having a good day when I got there, I could tell just by looking at him when I walked in the door. He said he hurt all over, his stomach was upset and he had a headache. He said he had told the nurse about it so I assumed she would see if ne could have some Tylenol. He hadn't eaten breakfast and refused to even have his tray brought in. He told me that even his brain wasn't working right, and we he can tell that, there's a problem.
Dr. Threlkeld thought that the pain in his joints could have been from the new antibiotic that they were giving in case there was a blood infection. He said that is a known side effect, but it doesn't affect everyone. There were still no results from the re-drawn of the blood when I left last night. He did say that if it wasn't a false positive, the picc line would probably have to come out. He does have some yeast developing around his privates so some cream was to be ordered for that.
When the nurse brought his morning meds I noticed that she didn't read off his prograf, which is one of the anti-rejection drugs. She said it wasn't ordered, but then when I said he was on it, she said that his level was too high during his last blood test. That made sense to me then that they were holding it. Why she just didn't say that to begin with, I don't know. Anyway, soon after I questioned it the coordinator I spoke with on the phone the day before came in to explain it, and his level was way too high. She also gave me her card and told me to have Stephanie call her instead of just requesting his records the way she usually does and that she would send her whatever they wanted. We discussed his upcoming visit to Mayo and decided that he would be too weak still to travel, so I message Stephanie Chandra's information last night and cancelled his appointments. I now need to cancel all of the hotels.
While Chandra and I were talking, Bill got some Tylenol for his headache and Polly, the other cardiology nurse practitioner came in and said she didn't like the way he was sounding so she ordered some Lasix to draw some more fluid off and then said that she wanted to have him transferred to the transplant unit itself, which is like and ICU, not because he was in distress, but so he could be monitored more closely. It is pretty much one on one nursing there. She also ordered a breathing treatment, but when they decided to transfer him it didn't get down until after the transfer.
As we were waiting for the transfer, which actually didn't happen for another 4 hours, Dr. Monday came in and said that another broncoscopy had not been taken off the table yet, they were just waiting to see what Dr. Threlkeld wanted.
After refusing lunch Bill was finally able to rest some. We got the room quiet with no TV so he could sleep. I was knitting and saw a white coat walking out of the room. I didn't even hear Dr. Williams come in and he didn't say anything since Bill was sleeping. He did come back and listen to him and asked me if they had done his chest x-ray, which they had, so he left to look at it, but didn't ever come back! So I don't know what it shows yet.
He finally got moved to the unit about 3 and he doesn't like it much. It's a much smaller room and lots of glass so that he can be seen easily. I imagine I'll hear how hard it was to sleep last night!,
Our nurse was one we had had in step-down and the nurse he had before he was moved said she is on all week-end and she would probably see him again. She didn't think he would be in the unit long. It sounded to me that the congestion was easing with the Lasix, as he wasn't coughing as much.
He did eat about half of his dinner. I made sure they would bring him the hot entrée, since his lunch was the same nasty sandwich he had had the night before, so he got a pork chop with some rice and cabbage.
Physical therapy came in and got him moved to his chair. During that short walk, only about 6 shuffling steps, his oxygen dropped to 78. It did come back up and at one point Rachel, the nurse and I looked at the monitor and he was at 97%! So, it's just when he moves, or sits upright that it's dropping. But, he had only moved 1 other time and that was to move to the gurney for the swallow test.
I told him I was coming later today, but that may not happen. I need to send a package off, and I don't know if the counter at the post office is open on Saturday. There is a mail service here in town, but I don't want to wait around until 10 for it to open, but the package I need to mail needs to be in Texas by Wednesday. I may take it to Emily to see if she will do it for me.
Ryan and Amanda are planning on coming down today. At least the unit has liberal visiting hours. It used to have the same restricted visiting hours as the regular ICU. The only difference to me staying there is I would have to sleep in the waiting room instead of his room. There's also only 1 good chair in his room, and that the one for him to sit in. So, it may be a very uncomfortable stay for me the next few days.
So, as always, 2 steps forward, 1 step back. Hopefully he won't be in the unit long and they can get the pneumonia cleared for good this time. His sinuses are not draining like they were, maybe from the new antibiotic, but they are very dry now from the oxygen. They had started humidifying it before he was moved, so maybe they'll get that again.
As I said, it was eventful, and frustrating that he's gone back some, but the drs. are all working together so hopefully they'll get a plan in place. When I know something, you'll know something.
Again, I've gotten so many messages of love, support and prayers through this, it's very heartwarming. Thank you to everyone, they are definitely felt.
Dr. Threlkeld thought that the pain in his joints could have been from the new antibiotic that they were giving in case there was a blood infection. He said that is a known side effect, but it doesn't affect everyone. There were still no results from the re-drawn of the blood when I left last night. He did say that if it wasn't a false positive, the picc line would probably have to come out. He does have some yeast developing around his privates so some cream was to be ordered for that.
When the nurse brought his morning meds I noticed that she didn't read off his prograf, which is one of the anti-rejection drugs. She said it wasn't ordered, but then when I said he was on it, she said that his level was too high during his last blood test. That made sense to me then that they were holding it. Why she just didn't say that to begin with, I don't know. Anyway, soon after I questioned it the coordinator I spoke with on the phone the day before came in to explain it, and his level was way too high. She also gave me her card and told me to have Stephanie call her instead of just requesting his records the way she usually does and that she would send her whatever they wanted. We discussed his upcoming visit to Mayo and decided that he would be too weak still to travel, so I message Stephanie Chandra's information last night and cancelled his appointments. I now need to cancel all of the hotels.
While Chandra and I were talking, Bill got some Tylenol for his headache and Polly, the other cardiology nurse practitioner came in and said she didn't like the way he was sounding so she ordered some Lasix to draw some more fluid off and then said that she wanted to have him transferred to the transplant unit itself, which is like and ICU, not because he was in distress, but so he could be monitored more closely. It is pretty much one on one nursing there. She also ordered a breathing treatment, but when they decided to transfer him it didn't get down until after the transfer.
As we were waiting for the transfer, which actually didn't happen for another 4 hours, Dr. Monday came in and said that another broncoscopy had not been taken off the table yet, they were just waiting to see what Dr. Threlkeld wanted.
After refusing lunch Bill was finally able to rest some. We got the room quiet with no TV so he could sleep. I was knitting and saw a white coat walking out of the room. I didn't even hear Dr. Williams come in and he didn't say anything since Bill was sleeping. He did come back and listen to him and asked me if they had done his chest x-ray, which they had, so he left to look at it, but didn't ever come back! So I don't know what it shows yet.
He finally got moved to the unit about 3 and he doesn't like it much. It's a much smaller room and lots of glass so that he can be seen easily. I imagine I'll hear how hard it was to sleep last night!,
Our nurse was one we had had in step-down and the nurse he had before he was moved said she is on all week-end and she would probably see him again. She didn't think he would be in the unit long. It sounded to me that the congestion was easing with the Lasix, as he wasn't coughing as much.
He did eat about half of his dinner. I made sure they would bring him the hot entrée, since his lunch was the same nasty sandwich he had had the night before, so he got a pork chop with some rice and cabbage.
Physical therapy came in and got him moved to his chair. During that short walk, only about 6 shuffling steps, his oxygen dropped to 78. It did come back up and at one point Rachel, the nurse and I looked at the monitor and he was at 97%! So, it's just when he moves, or sits upright that it's dropping. But, he had only moved 1 other time and that was to move to the gurney for the swallow test.
I told him I was coming later today, but that may not happen. I need to send a package off, and I don't know if the counter at the post office is open on Saturday. There is a mail service here in town, but I don't want to wait around until 10 for it to open, but the package I need to mail needs to be in Texas by Wednesday. I may take it to Emily to see if she will do it for me.
Ryan and Amanda are planning on coming down today. At least the unit has liberal visiting hours. It used to have the same restricted visiting hours as the regular ICU. The only difference to me staying there is I would have to sleep in the waiting room instead of his room. There's also only 1 good chair in his room, and that the one for him to sit in. So, it may be a very uncomfortable stay for me the next few days.
So, as always, 2 steps forward, 1 step back. Hopefully he won't be in the unit long and they can get the pneumonia cleared for good this time. His sinuses are not draining like they were, maybe from the new antibiotic, but they are very dry now from the oxygen. They had started humidifying it before he was moved, so maybe they'll get that again.
As I said, it was eventful, and frustrating that he's gone back some, but the drs. are all working together so hopefully they'll get a plan in place. When I know something, you'll know something.
Again, I've gotten so many messages of love, support and prayers through this, it's very heartwarming. Thank you to everyone, they are definitely felt.
Friday, October 26, 2018
After Wednesday's frustrating day, we got some answers yesterday, some causing relief and some causing concern, and some with "OK, now we know what to do" feelings. First the relief....his heart is fine! The echo and all the tests run for that showed that the heart is working normally, with no signs of rejection. I just sat and cried with relief! Iknew in my heart that it wasn't rejection, even though there were signs. But those same signs are also signs of other conditions, one of which is...wait for it...pneumonia!
Bill does have pneumonia again, this time in the lower lobe of his right lung, which is referred to as aspiration pneumonia. The way things were explained to me was that the airway coming off the esophagus (I think) to the left lung has a curve to it which makes it harder to get foreign objects through. By foreign objects I mean food and liquid. But the right lung doesn't have the curve, it's a straight shot into the lung. We don't remember him having any episode of choking on food or drink, but that doesn't mean anything. So, back on the same antibiotic as before.
Because of it being aspiration pneumonia, a modified Barium swallow test was done to see if he indeed was swallowing properly, and even if he was, if everything was going to where it was supposed to go. When Dr. Monday (it may actually be spelled Munday), one of the lung docs came in late yesterday afternoon and said he had seen the results of the test and he passed with flying colors. He said that they have not been asked to perform another broncoscopy but if Dr. Threlkeld wants one they would be happy to do it.
If you read back, or remember back to when he was in the nursing home after the transplant he had several of these studies before he was allowed to eat solid food and drink. He was on the ventilator so long, and the with the trach, his muscle control had deteriorated and he had to work with a speech therapist to strengthen them. He may get some speech therapy (even though it won't be for his speech) to see if that will help.
I saw my gastro dr. yesterday for my post procedure follow-up and he said it could be something called silent aspiration, which is when something is aspirated and there is no usual cough, like most people get when they choke on something. So, maybe today there will be a plan in place when I get there today.
The thing that is concerning is that one of the blood cultures that was drawn in the ER came back showing bacteria in his blood, so they repeated the test. This test they have to draw from 2 different places, so they used the picc line for 1 and his other arm for the other. They are hoping that it was just contaminated after it was drawn, or that the cap on the picc line hit the sheet after it had been wiped. A new antibiotic was started as a precaution since we won't get those results until today. Hopefully that is all it was, because it makes me think that, even though I was extremely careful with his picc line, is this something I could have done? But, that doesn't change the fact, if it is indeed a true positive, it has happened and there's no sense in worrying about where it came from. As my mother said, no matter how careful I was, it could have happened without me knowing, so there's no sense in worrying about it.
Dr. Edwards office called me in the afternoon to again reassure me that the heart was not showing any signs of rejection, and, said that they would contact Mayo. I asked them that in the morning when the nurse first gave us the news. And with the tests that have been done here, I don't think we'll have to go in November. I still haven't heard from Stephanie, but right now I don't think Bill could handle the trip.
Bill is feeling better, but he's still very short of breath when he sits up and his sats are still staying around 90% which is lower than they would like. He seems to like being at 88-89%, which of course is too low. 90 is the lowest target rate.
We have no timetable for coming home, although I am taking him some clothes today since he arrived in pajamas, and putting a full O2 tank in the car. I'll also have a small tank to get him to the car for when they do let him leave, which will probably be sometime next week, probably.
One thing I left out of the last report was about an angel named Don. As I was unloading Bill at the emergency room entrance, a middle-aged mad came over and asked if he could help us. I thanked him and said I think it was under control (why is it so hard to accept help!), but if he could magically find a parking spot that was close, it would be great. Just then, the very first spot opened up and he grabbed Bill's wheelchair and said "I've got him, you go park". That's when I heard him introduce himself to Bill. I did indeed get the spot, although there were a couple of other cars coming in the entrance heading for it, and when I got inside the hospital, Don had stayed with Bill, even informing the desk that he needed to be seen and that I would be in momentarily. I thanked him again when I got inside and he waved me off and went on his merry way. See, angels don't have to have wings and a halo and play a harp, they can be the the form of a large bearded man needing a haircut!
OK, I think that wraps it up for this time. I need to get moving, I need to make a Walmart run before I head to the hospital and it's nice and drizzly and foggy this morning, just like yesterday. Have I mentioned how much I hate driving at night, or how much I have driving at night in the rain, or even how much I hate driving in the drizzle and fog? Well, you get the picture. But, I'll make it.
Bill does have pneumonia again, this time in the lower lobe of his right lung, which is referred to as aspiration pneumonia. The way things were explained to me was that the airway coming off the esophagus (I think) to the left lung has a curve to it which makes it harder to get foreign objects through. By foreign objects I mean food and liquid. But the right lung doesn't have the curve, it's a straight shot into the lung. We don't remember him having any episode of choking on food or drink, but that doesn't mean anything. So, back on the same antibiotic as before.
Because of it being aspiration pneumonia, a modified Barium swallow test was done to see if he indeed was swallowing properly, and even if he was, if everything was going to where it was supposed to go. When Dr. Monday (it may actually be spelled Munday), one of the lung docs came in late yesterday afternoon and said he had seen the results of the test and he passed with flying colors. He said that they have not been asked to perform another broncoscopy but if Dr. Threlkeld wants one they would be happy to do it.
If you read back, or remember back to when he was in the nursing home after the transplant he had several of these studies before he was allowed to eat solid food and drink. He was on the ventilator so long, and the with the trach, his muscle control had deteriorated and he had to work with a speech therapist to strengthen them. He may get some speech therapy (even though it won't be for his speech) to see if that will help.
I saw my gastro dr. yesterday for my post procedure follow-up and he said it could be something called silent aspiration, which is when something is aspirated and there is no usual cough, like most people get when they choke on something. So, maybe today there will be a plan in place when I get there today.
The thing that is concerning is that one of the blood cultures that was drawn in the ER came back showing bacteria in his blood, so they repeated the test. This test they have to draw from 2 different places, so they used the picc line for 1 and his other arm for the other. They are hoping that it was just contaminated after it was drawn, or that the cap on the picc line hit the sheet after it had been wiped. A new antibiotic was started as a precaution since we won't get those results until today. Hopefully that is all it was, because it makes me think that, even though I was extremely careful with his picc line, is this something I could have done? But, that doesn't change the fact, if it is indeed a true positive, it has happened and there's no sense in worrying about where it came from. As my mother said, no matter how careful I was, it could have happened without me knowing, so there's no sense in worrying about it.
Dr. Edwards office called me in the afternoon to again reassure me that the heart was not showing any signs of rejection, and, said that they would contact Mayo. I asked them that in the morning when the nurse first gave us the news. And with the tests that have been done here, I don't think we'll have to go in November. I still haven't heard from Stephanie, but right now I don't think Bill could handle the trip.
Bill is feeling better, but he's still very short of breath when he sits up and his sats are still staying around 90% which is lower than they would like. He seems to like being at 88-89%, which of course is too low. 90 is the lowest target rate.
We have no timetable for coming home, although I am taking him some clothes today since he arrived in pajamas, and putting a full O2 tank in the car. I'll also have a small tank to get him to the car for when they do let him leave, which will probably be sometime next week, probably.
One thing I left out of the last report was about an angel named Don. As I was unloading Bill at the emergency room entrance, a middle-aged mad came over and asked if he could help us. I thanked him and said I think it was under control (why is it so hard to accept help!), but if he could magically find a parking spot that was close, it would be great. Just then, the very first spot opened up and he grabbed Bill's wheelchair and said "I've got him, you go park". That's when I heard him introduce himself to Bill. I did indeed get the spot, although there were a couple of other cars coming in the entrance heading for it, and when I got inside the hospital, Don had stayed with Bill, even informing the desk that he needed to be seen and that I would be in momentarily. I thanked him again when I got inside and he waved me off and went on his merry way. See, angels don't have to have wings and a halo and play a harp, they can be the the form of a large bearded man needing a haircut!
OK, I think that wraps it up for this time. I need to get moving, I need to make a Walmart run before I head to the hospital and it's nice and drizzly and foggy this morning, just like yesterday. Have I mentioned how much I hate driving at night, or how much I have driving at night in the rain, or even how much I hate driving in the drizzle and fog? Well, you get the picture. But, I'll make it.
Thursday, October 25, 2018
Bill was admitted back to the hospital yesterday afternoon for shortness of breath. Every little movement sent his oxygen level extremely low. They seem to be concentrating more on his heart this time. Dr. Burbeck seemed to think that it was a rejection issue more than a pulmonary issue, yet Stephanie didn't seem to think so when I gave her the symptoms.
Ricky, our home health nurse, came by yesterday and listened and he said he heard some odd sounds in the lower part of his left lung with his normal wheezing in the top. So, off we went.
Bill was not happy to be going and was refusing, until I sat on the bed with him and cried. I told him he needed to see how this affected other people. I also told him that I knew he was tired of being poked and prodded, but unless he was ready to let go, he wasn't dying on my watch. So, he said he would go.
All kinds of tests were run...chest x-ray, echo, EKG, CT scan and lots of labs, but I still know absolutely nothing! He was somewhat dehydrated so he got two bags of IV pushed and some Lasix. They way that was explained, since that seemed to me to contradict, was that they needed to draw some fluid from his ankles which were a little swollen, but they didn't want it to draw too much fluid, hence the IVs.
I did not like the ER dr, and I'm usually differential to them. But, he had the "I'm the dr. and you are just the patient's wife" attitude. I could probably tell him more about Bill's medical condition and history than he would be able to find through whatever tests he wanted done. He came into the room 1 time and 1 time only.
The nurse that was still on when he got upstairs was one we had before and she was a sweetie in the 45 minutes we had her, even got a meal tray ordered and heated for him. His night nurse Cody was good too. I usually don't see much of the night staff since I come home every night, but I knew he would have questions that Bill couldn't answer.
The only real drawback so far, other than not knowing what is going on, is that he's in one of the self-adjusting beds to prevent bedsores and it sits very high and the tray table will not go under it far enough for him to eat easily. I may have to ask if it can be changed to a regular bed.
I'm mulling around the idea of having him transferred to Mayo. We are members of the Med-evac system so there would be no cost to him. They do have medical planes, in addition to helicopters. I don't know if I would be able to fly with him or have to drive so Emily and I have been brainstorming the logistics of everything. I'll know more on making that decision when I hear back from Stephanie, and when I know more about the plan here.
So, that's where we are. Hopefully I'll get there to see some of the drs. this morning and then go from there. I can see some of his record online and there are no tests ordered for today so far. There are also no results from everything yesterday.
I don't know if I'll get this updated tonight after I get home or if I'll wait until in the morning like today, it will just depend on how tired I am when I get home. All the family has been notified, but I don't know if a couple of them turned their cell phones on. They are travelling and they usually don't keep their phones on or check social media or anything on the road. So, they may not know. But all other family members who need to know have been notified.
OK, need to get moving. It's still earlier than I want to leave, but I've got to get some things gathered for Bill then stop and get gas and breakfast and hit the road. Until the next update...
Ricky, our home health nurse, came by yesterday and listened and he said he heard some odd sounds in the lower part of his left lung with his normal wheezing in the top. So, off we went.
Bill was not happy to be going and was refusing, until I sat on the bed with him and cried. I told him he needed to see how this affected other people. I also told him that I knew he was tired of being poked and prodded, but unless he was ready to let go, he wasn't dying on my watch. So, he said he would go.
All kinds of tests were run...chest x-ray, echo, EKG, CT scan and lots of labs, but I still know absolutely nothing! He was somewhat dehydrated so he got two bags of IV pushed and some Lasix. They way that was explained, since that seemed to me to contradict, was that they needed to draw some fluid from his ankles which were a little swollen, but they didn't want it to draw too much fluid, hence the IVs.
I did not like the ER dr, and I'm usually differential to them. But, he had the "I'm the dr. and you are just the patient's wife" attitude. I could probably tell him more about Bill's medical condition and history than he would be able to find through whatever tests he wanted done. He came into the room 1 time and 1 time only.
The nurse that was still on when he got upstairs was one we had before and she was a sweetie in the 45 minutes we had her, even got a meal tray ordered and heated for him. His night nurse Cody was good too. I usually don't see much of the night staff since I come home every night, but I knew he would have questions that Bill couldn't answer.
The only real drawback so far, other than not knowing what is going on, is that he's in one of the self-adjusting beds to prevent bedsores and it sits very high and the tray table will not go under it far enough for him to eat easily. I may have to ask if it can be changed to a regular bed.
I'm mulling around the idea of having him transferred to Mayo. We are members of the Med-evac system so there would be no cost to him. They do have medical planes, in addition to helicopters. I don't know if I would be able to fly with him or have to drive so Emily and I have been brainstorming the logistics of everything. I'll know more on making that decision when I hear back from Stephanie, and when I know more about the plan here.
So, that's where we are. Hopefully I'll get there to see some of the drs. this morning and then go from there. I can see some of his record online and there are no tests ordered for today so far. There are also no results from everything yesterday.
I don't know if I'll get this updated tonight after I get home or if I'll wait until in the morning like today, it will just depend on how tired I am when I get home. All the family has been notified, but I don't know if a couple of them turned their cell phones on. They are travelling and they usually don't keep their phones on or check social media or anything on the road. So, they may not know. But all other family members who need to know have been notified.
OK, need to get moving. It's still earlier than I want to leave, but I've got to get some things gathered for Bill then stop and get gas and breakfast and hit the road. Until the next update...
Saturday, October 20, 2018
I don't know how coherent this post will be, or how long. I got my flu and pneumonia shots yesterday and today every bone in my body hurts, I'm stuffy and can't raise my arms above my head. I'm so tired all I want to do is go back to bed, but that won't happen for a while anyway.
Bill saw Dr. Threlkeld Tuesday and he added one more week of antibiotics. He also said that he wants to see him in 2 months, but if we are tired of drs. to put him on the back burner. I doubt that we do that since Dr. Burbeck said that she still sees pneumonia on x-ray and the IVs were keeping him from the hospital. I don't know what will happen when they pull the picc line next week! I see Dr. Raj on Thursday and they said just to come by the office and they will pull it, with no appointment.
Bill has not done well this week. Every time he moves, especially walking to/from the bathroom, his O2 sats are dropping into the low 70s, low enough that his nails are turning blue from lack of oxygen. He does come back up, but I have to turn his flow up as far as it will go and he usually puts the cannula in his mouth since he just gasps for air. So far there have been no answers or suggestions. We are doing everything we can, breathing treatments and inhalers and nothing helps. I think if he just moved more it would help. Since he sits slouched, when he straightens up, all of the junk in his lungs moves and that causes the problem.
He's been discharged from physical therapy. Medicare won't pay for any more since he only progresses so far and then has a set back and we start all over. But, we he was doing his exercises the other day, his O2 was at 97. We bought an are/leg exercise that he can sit and peddle and it came in this week. Ryan came over yesterday and put it together for him. Hopefully that will help.
Bill's daughter Aimee and her husband Lee stopped in Thursday night on their way to North Carolina. Lee was at the Marine Barracks in Beirut when it was bombed. There is a reunion every year at Ft. Bragg but he hasn't been able to go emotionally until now. They stayed for dinner and left yesterday morning. They may stop in on their way home Thursday.
While I was working in the kitchen Thursday I noticed some water on the floor and opened the doors under the sink. It was full of water! It hadn't done it when I washed dishes the night before, so whatever happened and just happened. While Ryan was here yesterday he found the leak, in the sprayer hose, and we finally found a replacement hose to fit. It's still not quite right as the bolt at the head is too big to go into the faucet, but it's usuable for now. We're going to have to replace the whole thing but it will probably wait until after we get back from Florida.
That's about it, I'm about done in. I hooked Bill's IV up at 6 and I've fed the inside cats. It's time to feed the outside cats and then I think I'll just sit and doze until it's time to remove the IV and then give meds. After that, I may go back to bed. Hope everyone feels better than I do!
Bill saw Dr. Threlkeld Tuesday and he added one more week of antibiotics. He also said that he wants to see him in 2 months, but if we are tired of drs. to put him on the back burner. I doubt that we do that since Dr. Burbeck said that she still sees pneumonia on x-ray and the IVs were keeping him from the hospital. I don't know what will happen when they pull the picc line next week! I see Dr. Raj on Thursday and they said just to come by the office and they will pull it, with no appointment.
Bill has not done well this week. Every time he moves, especially walking to/from the bathroom, his O2 sats are dropping into the low 70s, low enough that his nails are turning blue from lack of oxygen. He does come back up, but I have to turn his flow up as far as it will go and he usually puts the cannula in his mouth since he just gasps for air. So far there have been no answers or suggestions. We are doing everything we can, breathing treatments and inhalers and nothing helps. I think if he just moved more it would help. Since he sits slouched, when he straightens up, all of the junk in his lungs moves and that causes the problem.
He's been discharged from physical therapy. Medicare won't pay for any more since he only progresses so far and then has a set back and we start all over. But, we he was doing his exercises the other day, his O2 was at 97. We bought an are/leg exercise that he can sit and peddle and it came in this week. Ryan came over yesterday and put it together for him. Hopefully that will help.
Bill's daughter Aimee and her husband Lee stopped in Thursday night on their way to North Carolina. Lee was at the Marine Barracks in Beirut when it was bombed. There is a reunion every year at Ft. Bragg but he hasn't been able to go emotionally until now. They stayed for dinner and left yesterday morning. They may stop in on their way home Thursday.
While I was working in the kitchen Thursday I noticed some water on the floor and opened the doors under the sink. It was full of water! It hadn't done it when I washed dishes the night before, so whatever happened and just happened. While Ryan was here yesterday he found the leak, in the sprayer hose, and we finally found a replacement hose to fit. It's still not quite right as the bolt at the head is too big to go into the faucet, but it's usuable for now. We're going to have to replace the whole thing but it will probably wait until after we get back from Florida.
That's about it, I'm about done in. I hooked Bill's IV up at 6 and I've fed the inside cats. It's time to feed the outside cats and then I think I'll just sit and doze until it's time to remove the IV and then give meds. After that, I may go back to bed. Hope everyone feels better than I do!
Friday, October 12, 2018
We had quite the day yesterday. We left the house at 6 and didn't get home until 4. I know Bill was tired and I was exhausted. And of course when I get that tired I get cranky and impatient, so it was a trying evening at times, too.
Our first stop was the ENT, Dr. Shete. She scheduled his sinus surgery for the 23rd. He would have to be put on a vent for the procedure. But it would be done in the ambulatory center instead of the hospital. He still has fluid behind his right ear, which is contributing to his hearing problem.
She did contact Dr. Shaboghadi, Dr. Sarah as she likes to be called, and we were able to go for the additional hearing test right then. She also confirmed the fluid in his ear and said that his right ear showed no real change from the test she did in the hospital. But the left ear had improved. So, whatever was going on with the left ear had resolved. She said to come back after th.e surgery for a last test and then we could get his hearing aids from the VA at no cost, so that will save a few thousand dollars! She also accompanied us, pushing Bill in his wheelchair, through the underground tunnel to the hospital so that we could get something to eat. She even went with us all the way to the cafeteria and offered to help get our food! But, I told her we could manage that ourselves. It wasn't crowded yet so I pushed Bill through and saw that they had chicken strips on the self serve so that's what he decided on. Then I got him situated and went back to get our tray.
We were both tired enough by then that we really weren't hungry, even though we were hungry since we hadn't had any breakfast. I hope you can understand that feeling since most of us have felt that way at some time or another, I'm sure. By then it was time to walk back over to the other building (going the "normal" way). We did have a little problem, the 2nd oxygen tank I had with us leaked all the air out as soon as I opened the seal. So, put the old tank back on which still had a little left in it and walked all the way through the building to the end of the parking garage and got the 3rd tank, then all the way back to the front of the building to the elevator to get to Dr. Burbeck's office.
We got in a little early there, which is unusual. She usually runs late. After all of the preliminaries were done, walking and a pulmonary function test, she nixed the surgery for the sinuses. She said that lungs weren't strong enough at this time to handle it. She did say that the IV medicine he's on should also clear the sinuses, although it doesn't seem to be doing a lot of good. Most of the drainage seems to be collecting in his upper airways so he sounds like he's gurgling. She told him when he starts doing that to cough it up...and out. She did another chest xray and a breathing treatment before we left. The xray had improved from the last one done. She said he still has pneumonia, but the IV meds are keeping it at bay for now. And she recommended that we do the breathing treatments on a regular schedule again instead of as needed.
So, the results weren't exactly what we had hoped for. But, they could have been worse with her wanting to admit him again, although I don't think that was actually on the table. I did ask her about that tubing we bought with the mouthpiece on it and she was quite intrigued. I had brought one with us and she had a couple of her people look at it. But, as I suspected, it's useless. They did a bubble test which consists of putting the cannula in a bit of water to see if there are bubbles. If there are, oxygen is moving through, if not no oxygen. The nasal part passed the test, but the hook for the mouth did not, so no air gets to that part. But it was worth the try. She also bumped his oxygen to 4 liters continuously, which is really pretty high and is going to eat those tanks up really fast. So, if I talk to our delivery man today, and I should, I'll ask him what other options we will have. The portable unit we bought for the car only goes to 3 and the DC cable is not working. We ran totally on batteries there and back and barely had enough tank oxygen left. There was his little walking tank to get from the car to the house but I can't drive and hook tanks up at the same time!
Last night was the first night I set an alarm and got up when it was time to disconnect his IV. As soon as it was time to do it we hooked him up and then went to bed. That's really when the cranky set in. It seemed like Bill was doing everything possible to avoid getting ready for bed...when he had been snoozing on the couch! And then the kitten started in getting into things. He was totally wild last night for awhile and I had to get the water bottle after him. Cat brought me her "dead" mouse in the night and just meowed and meowed until I scratched her head. She's slowly getting back to the old Cat, although she still doesn't like Mousie much.
The rest of the week was pretty normal. We did not get the IV meds until Tuesday, so he missed 11 doses. I called the supplier Monday morning and found out that they hadn't been ordered! So he called the office and got that set up. But instead of using a courier to drive the 70 miles and back to get them to us, the sent them the usual Fedex overnight. We still don't have an appointment for next week. I called Dr. Threlkeld's office and they told me they were still moving patients around and they hadn't forgotten about us. So, I'll need to check on that again today, since he will get his last dose of medicine tomorrow morning. Ricky will be here today to change his dressing and maybe do labs again.
One of our friends from Mayo passed away this week. He was another VAD patient that we mentored. We sat with his wife during his implant and she sat with me during Bill's transplant. John had opted not to get a transplant since the VAD made him feel so much better. He hadn't been doing well for a few months, losing blood but couldn't find where it was coming from. Anyway, I got a message from Cindi that he had passed away and then she thanked me for giving them the courage to have the implant which gave them 6 1/2 more years together. I feel so bad for her, but I understand what she means. We may have to take a detour when we come home to stop and see her. She lives outside Pensacola in Gulf Breeze. I don't think they were affected as much by Hurricane Michael as elsewhere.
Our weather finally got cool! We were in the 90s earlier in the week and this morning it's only 45. The house is a little cool, but it's 70 in here so not too bad. But supposed to only be in the 50s for the week-end. I'm making a pot of potato soup today so that will be good for tonight. Tonight is also homecoming so there will be a parade this afternoon that we won't go to of course. But, the kids are all going to the game at least.
So, big update for this week. If anything breaks with appointments for next week I'll let you know. It's now time for more coffee and almost time for Bill's morning IV. See you next week!
Our first stop was the ENT, Dr. Shete. She scheduled his sinus surgery for the 23rd. He would have to be put on a vent for the procedure. But it would be done in the ambulatory center instead of the hospital. He still has fluid behind his right ear, which is contributing to his hearing problem.
She did contact Dr. Shaboghadi, Dr. Sarah as she likes to be called, and we were able to go for the additional hearing test right then. She also confirmed the fluid in his ear and said that his right ear showed no real change from the test she did in the hospital. But the left ear had improved. So, whatever was going on with the left ear had resolved. She said to come back after th.e surgery for a last test and then we could get his hearing aids from the VA at no cost, so that will save a few thousand dollars! She also accompanied us, pushing Bill in his wheelchair, through the underground tunnel to the hospital so that we could get something to eat. She even went with us all the way to the cafeteria and offered to help get our food! But, I told her we could manage that ourselves. It wasn't crowded yet so I pushed Bill through and saw that they had chicken strips on the self serve so that's what he decided on. Then I got him situated and went back to get our tray.
We were both tired enough by then that we really weren't hungry, even though we were hungry since we hadn't had any breakfast. I hope you can understand that feeling since most of us have felt that way at some time or another, I'm sure. By then it was time to walk back over to the other building (going the "normal" way). We did have a little problem, the 2nd oxygen tank I had with us leaked all the air out as soon as I opened the seal. So, put the old tank back on which still had a little left in it and walked all the way through the building to the end of the parking garage and got the 3rd tank, then all the way back to the front of the building to the elevator to get to Dr. Burbeck's office.
We got in a little early there, which is unusual. She usually runs late. After all of the preliminaries were done, walking and a pulmonary function test, she nixed the surgery for the sinuses. She said that lungs weren't strong enough at this time to handle it. She did say that the IV medicine he's on should also clear the sinuses, although it doesn't seem to be doing a lot of good. Most of the drainage seems to be collecting in his upper airways so he sounds like he's gurgling. She told him when he starts doing that to cough it up...and out. She did another chest xray and a breathing treatment before we left. The xray had improved from the last one done. She said he still has pneumonia, but the IV meds are keeping it at bay for now. And she recommended that we do the breathing treatments on a regular schedule again instead of as needed.
So, the results weren't exactly what we had hoped for. But, they could have been worse with her wanting to admit him again, although I don't think that was actually on the table. I did ask her about that tubing we bought with the mouthpiece on it and she was quite intrigued. I had brought one with us and she had a couple of her people look at it. But, as I suspected, it's useless. They did a bubble test which consists of putting the cannula in a bit of water to see if there are bubbles. If there are, oxygen is moving through, if not no oxygen. The nasal part passed the test, but the hook for the mouth did not, so no air gets to that part. But it was worth the try. She also bumped his oxygen to 4 liters continuously, which is really pretty high and is going to eat those tanks up really fast. So, if I talk to our delivery man today, and I should, I'll ask him what other options we will have. The portable unit we bought for the car only goes to 3 and the DC cable is not working. We ran totally on batteries there and back and barely had enough tank oxygen left. There was his little walking tank to get from the car to the house but I can't drive and hook tanks up at the same time!
Last night was the first night I set an alarm and got up when it was time to disconnect his IV. As soon as it was time to do it we hooked him up and then went to bed. That's really when the cranky set in. It seemed like Bill was doing everything possible to avoid getting ready for bed...when he had been snoozing on the couch! And then the kitten started in getting into things. He was totally wild last night for awhile and I had to get the water bottle after him. Cat brought me her "dead" mouse in the night and just meowed and meowed until I scratched her head. She's slowly getting back to the old Cat, although she still doesn't like Mousie much.
The rest of the week was pretty normal. We did not get the IV meds until Tuesday, so he missed 11 doses. I called the supplier Monday morning and found out that they hadn't been ordered! So he called the office and got that set up. But instead of using a courier to drive the 70 miles and back to get them to us, the sent them the usual Fedex overnight. We still don't have an appointment for next week. I called Dr. Threlkeld's office and they told me they were still moving patients around and they hadn't forgotten about us. So, I'll need to check on that again today, since he will get his last dose of medicine tomorrow morning. Ricky will be here today to change his dressing and maybe do labs again.
One of our friends from Mayo passed away this week. He was another VAD patient that we mentored. We sat with his wife during his implant and she sat with me during Bill's transplant. John had opted not to get a transplant since the VAD made him feel so much better. He hadn't been doing well for a few months, losing blood but couldn't find where it was coming from. Anyway, I got a message from Cindi that he had passed away and then she thanked me for giving them the courage to have the implant which gave them 6 1/2 more years together. I feel so bad for her, but I understand what she means. We may have to take a detour when we come home to stop and see her. She lives outside Pensacola in Gulf Breeze. I don't think they were affected as much by Hurricane Michael as elsewhere.
Our weather finally got cool! We were in the 90s earlier in the week and this morning it's only 45. The house is a little cool, but it's 70 in here so not too bad. But supposed to only be in the 50s for the week-end. I'm making a pot of potato soup today so that will be good for tonight. Tonight is also homecoming so there will be a parade this afternoon that we won't go to of course. But, the kids are all going to the game at least.
So, big update for this week. If anything breaks with appointments for next week I'll let you know. It's now time for more coffee and almost time for Bill's morning IV. See you next week!
Saturday, October 6, 2018
We didn't quite get the result we wanted from our visit to Dr. Threlkeld yesterday. The labs from last week showed that his white count had gone back up. It's not alarmingly high, 10.5, but at discharge it was 8.4. So, instead of getting the picc line out, we're doing another week of antibiotics. I only had 1 infusion left, and they didn't get any delivered last night, so he didn't get his last one, and he's not getting his morning one, so far.
Other than him not getting the medicine, I was thrilled to go to bed early last night. The cats had gotten me up at 4:30 yesterday with a crash. I still haven't figured out what it was. Then the drive to/from Memphis, oxygen delivery, letting home health know that the nurses at the dr. did not change his dressing so he would need to, getting us something to eat, I was pooped and went to bed a little after 9. I didn't sleep really well, the cat brought me her squeaky mouse at 2 and meowed until I told her she was a good kitty and gave her a head rub, and Bill had a hard time using the bathroom. But, when I went back to sleep the next thing I knew was the alarm for his 1st dose of medicine was going off! I got to sleep an extra hour! Of course Kitty was right there and let me know that she had given me an extra hour and it was now time to get moving. But it sure felt good to sleep longer!
Ryan and Daniel came over this week and fixed the toilet in the bathroom (it had come unsealed but wasn't leaking) and put in a new floor. The floor we put down when we redid the bathroom did not hold up well and the glue from the backing was showing through. We just did some peel and stick vinyl tile, but it looks nice. Now, I want to paint 1/2 the walls again!
I got Bill his appointment with Dr. Shete the ENT. It's Thursday morning at 8. That means rush hour traffic to an office we've never been to and don't know how to get there. Thank goodness for navigation! I'll just program it in and go where it tells me. She wanted to wait to see him after he was off all antibiotics, yet she wanted to see him within 2 weeks after discharge. I'll don't have a clue what she will do. He's still snotty and full and he can't hear out of his right ear. He says it even feels funny to touch. I tried to get an appointment with the audiologist for after that, and it can still happen, if Dr. Shete will fax over an order right then. We can be squeezed in before we see Dr. Burbeck at 1. That's going to be a very long day, especially since we have to leave by 6.
The week of the 15th, we are supposed to go back to Dr. Threlkeld, and the nurse wanted Bill to see the Dr. this time, but he's booked all that week, and the nurses were too, so they are just going to call to let us know when to come. We don't have anything else scheduled, at that time, anyway. Then the next week, I go back to see the gastro dr. I'm still having a little trouble swallowing, but I think it's due more to the hiatal hernia than the dilation not working. So, we will see. And then, the 4th of November we head to Mayo and on down to see Bill's sister. It will be the first time we've seen them in 2 years and the first since their daughter passed away, so it will be a little bittersweet.
The air has gone back to being dirty from all the harvesting going on. Cotton is being picked, beans and rice cut, so there's a lot of dust in the air again. I'm coughing and snotty again too, and I know it's just from this. But I think they've stopped burning the fields, so at least there's not the heavy smoke anymore.
So, that's it. I've got tons of paperwork to do, retirement money paperwork, disability paperwork for Ryan, end of life paperwork so Emily doesn't go crazy like she did trying to go through her dad's stuff, Mayo Pharmacy survey, so I think I'll do that while I'm doing laundry. At least it can be a multi-tasking day! Have a good week-end!
Other than him not getting the medicine, I was thrilled to go to bed early last night. The cats had gotten me up at 4:30 yesterday with a crash. I still haven't figured out what it was. Then the drive to/from Memphis, oxygen delivery, letting home health know that the nurses at the dr. did not change his dressing so he would need to, getting us something to eat, I was pooped and went to bed a little after 9. I didn't sleep really well, the cat brought me her squeaky mouse at 2 and meowed until I told her she was a good kitty and gave her a head rub, and Bill had a hard time using the bathroom. But, when I went back to sleep the next thing I knew was the alarm for his 1st dose of medicine was going off! I got to sleep an extra hour! Of course Kitty was right there and let me know that she had given me an extra hour and it was now time to get moving. But it sure felt good to sleep longer!
Ryan and Daniel came over this week and fixed the toilet in the bathroom (it had come unsealed but wasn't leaking) and put in a new floor. The floor we put down when we redid the bathroom did not hold up well and the glue from the backing was showing through. We just did some peel and stick vinyl tile, but it looks nice. Now, I want to paint 1/2 the walls again!
I got Bill his appointment with Dr. Shete the ENT. It's Thursday morning at 8. That means rush hour traffic to an office we've never been to and don't know how to get there. Thank goodness for navigation! I'll just program it in and go where it tells me. She wanted to wait to see him after he was off all antibiotics, yet she wanted to see him within 2 weeks after discharge. I'll don't have a clue what she will do. He's still snotty and full and he can't hear out of his right ear. He says it even feels funny to touch. I tried to get an appointment with the audiologist for after that, and it can still happen, if Dr. Shete will fax over an order right then. We can be squeezed in before we see Dr. Burbeck at 1. That's going to be a very long day, especially since we have to leave by 6.
The week of the 15th, we are supposed to go back to Dr. Threlkeld, and the nurse wanted Bill to see the Dr. this time, but he's booked all that week, and the nurses were too, so they are just going to call to let us know when to come. We don't have anything else scheduled, at that time, anyway. Then the next week, I go back to see the gastro dr. I'm still having a little trouble swallowing, but I think it's due more to the hiatal hernia than the dilation not working. So, we will see. And then, the 4th of November we head to Mayo and on down to see Bill's sister. It will be the first time we've seen them in 2 years and the first since their daughter passed away, so it will be a little bittersweet.
The air has gone back to being dirty from all the harvesting going on. Cotton is being picked, beans and rice cut, so there's a lot of dust in the air again. I'm coughing and snotty again too, and I know it's just from this. But I think they've stopped burning the fields, so at least there's not the heavy smoke anymore.
So, that's it. I've got tons of paperwork to do, retirement money paperwork, disability paperwork for Ryan, end of life paperwork so Emily doesn't go crazy like she did trying to go through her dad's stuff, Mayo Pharmacy survey, so I think I'll do that while I'm doing laundry. At least it can be a multi-tasking day! Have a good week-end!
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