First of all - Happy Thanksgiving to all !
David came home today, and for that I am thankful ! His mom is here too, and for that I am thankful ! Mom "dave-sat" for a while so I could spend some time with my family today, and for that I am thankful ! A good friend helped with some chores today, and for that I am thankful ! My kids helped my parents with Thanksgiving preparations today for me, and for that I am thankful ! Counting my blessings tonight - of which I have many !
The last couple of weeks have been very long. Although David is home where he wants to be, he is not well at all. He was admitted to the hospital due to low sodium level. He'd been running low pressures for a while, but they started running even lower too. His ammonia and potassium were a little high. This was friday before last. Originally all they did was put him on a even lower fluid restriction than he was already on. Explained that the sodium level would go low due to too much fluid intake or too much fluid loss. He had had his weekly paracentesis on tuesday. Frequently he will "leak" some from the puncture site for a day or two after. This time he leaked a lot - was still leaking profusely when we went into the ER ! They had also taken a liter more than normal that week. I tried to question the Dr.'s about whether this was the reason for the drop in his sodium, but they pretty much brushed it off and seemed to assume that he was consuming too many fluids. His blood pressure drop - to me - also seemed to coincide with the loss of fluid. None of the Drs. seemed to think there was a connection. Just resticted his fluid intake.
about 3am that following Sunday morning I got a call from the hospital that David had fallen and they were taking him to ICU and wanted to know if he had a medical directive for a ventilator. I rushed to the hospital and called his family on the way. When I got there he was pretty out of it but no ventilator and he was responsive when I talked to him. about 8am he said he had to use the toilet - lactulose was working. Nurse came in and we got him sat up on the edge of the bed. she showed him where the toilet was and asked tried to get him to acknowledge that he comprehended. He mumbled a little and then had this wide eyed blank stare look and would not respond any more. She got him layed back down and told me I had to leave the room. I was scared too death that this was it. When they let me back in first an internal medicine Dr. came in and said something about testing the fluid in his abdomen for infection because he was so out of it. Then a Kidney Dr. showed up and said his kidneys were failing. Then another internal medicine Dr. showed up and said he probably had bleeding varicies in his esophagus but didn't feel that a scope was warranted due to the kidney failure. We were told that they didn't know if he would make it through the day. His blood pressure was so low and his ammonia level had doubled overnight. All that day he was unresponsive ( except for when he passed gas a couple of times - he said "excuse me" LOL ). about 7 or 8pm a new nurse was coming on and she came in and talked to him. He responded ! From then and throughout the night he was responsive. Monday morning came and I was able to get him to drink some juice. By lunchtime he was awake and talking - still very lethargic - but ate about half of a fruit plate. By dinner time he ate a whole fruit plate and wanted more !
Tuesday, although very tired he was doing better. Numbers were improving. They did his weekly draining and transferred him out of the ICU. Tuesday evening he was telling me that he had to get up and use the bathroom - lactulose was working again. I explained that he had a tube to take care of that and he didn't need to do anything. He kept complaining and I had the nurses check his tube twice. They said it was fine. Eventually I heard it and looked. He had had a bowel movement and the tube came out too - obviously there was something wrong with the tube. Not too long after that he started having pains in his abdomen. He has a very high pain tolerance so I knew something was very wrong. X-ray was done and he had a blockage. Put a ng tube through the nose to the stomache and no food or drink. Went back and forth for the next 3 days as to whether it was an obstruction or not - one Dr or nurse would say it was and another would say it wasn't. He was very grumpy - felt better overall but just wanted something to drink. Finally did a CT scan and found that it was just a blockage and that it was fecal material. He had been begging, bribing, and bargaining just to get something to drink. At one point Dr. said that the bowel was just working slowly due to the liver. Ultimately it was decided that they were just going to keep the ng tube in and "let it do it's job" which it didn't seem to be doing anything. He was thirsty, miserable and hadn't had anything to eat or drink for 3+ days. I asked for IV nutrition and the nurses said they would put a note in his chart - but nothing happened. Finally the straw that broke the camel's back is when the CT scan showed nothing more than fecal material and the nurse thought that the DR would order an enima but instead he decided to leave the ng tube in to "do it's job". I was frustrated beyond belief. He was already so weak and then had not had anything to eat or drink for 3 days. He had also not had a bowel movement and I knew that his ammonia level was going up. I asked the nurse what his ammonia level was at. She told me that they had not checked it for the last couple of days ! That was it. I had denied him any drinks, denied him the cup of coffee he wanted to get his motor running because I was trying to follow Drs orders. The ng tube was to let his stuff "rest" and hopefully the blockage would resolve itself. I got him a cup of coffee. He drank it and not 5 minutes later SHAZAM. Problem solved ! I wish I would have done it sooner!
Once that hurdle was conquered - he was put on a clear liquid diet. That was last Saturday. From low fluids to no fluids to all fluids with no restriction ??? Belly of course swelled up as well as legs and feet which haven't been for a long time. He was feeling pretty good but blood pressure still low. Sunday - regular food and feeling pretty good. Talk of going home on Monday. Sunday night, blood pressure down. Monday feeling pretty bloated and ate only 1/2 bowl of cereal for breakfast. Very sleepy, low blood pressure. Not going home. Tuesday sleeping. sleeping, sleeping. Slept through weekly draining and most of the day. Wednesday feeling better in the AM. Ate breakfast. Ammonia level down but not quite there mentally. Internal medicine Dr says good day to go home because he's feeling good. Kidney Dr said no, wants to observe one more night. Sleeping, sleeping, sleeping. Today both said OK to go home.
I am thankful to have him home and am looking forward to cuddling in a minute, but he is not going to be with me for very much longer. I feel like mistakes have been made over this last couple of weeks due to Drs. attitudes that he has what he has due to drinking and this is what happens. I know that they are right to a certain extent, but I think they have jumped the gun on his death sentance with what has transpired and that the treatment given has expedited his death instead of prolonging his life. He has, on the other hand, fought so hard these last several months.
Ok - enough of my babbling. I'm going to go cuddle with my love.
Thanks for listening/reading !