Let's not talk about it

I don't even really know where to begin. But I am trying to blog our journey, so here goes.

11 days ago I brought John into the hospital because he had been throwing up for 2 days. I did not know how bad it all was. The first issue was he was severely dehydrated. His creatinine level was at 389, should be below 100. They got those fluids going into him super fast. His kidneys were pretty slow to respond, but did start working. Dialysis was talked about several times, but he was able to make it through that and his kidneys are doing pretty good now. He was having trouble peeing so he did have to have a catheter in. He hated it!!! After a couple days he begged and they took it out.

Since we had actually come in because of puking they did decide to do an endoscopy to look at his stomach after a few days. But in the mean time his body was freaking out on several levels. His numbers were all over the board. We assumed mostly from the dehydration. Everything was going in the wrong direction. His platelets were too low for the endoscopy and he had a transfusion and his count went down. It was weird. Also his blood was too thin so he needed FFP (plasma). And his tachro level was not going down. He has had more trasnfusions these past 11 days than he has had in 9 months. Tachro is a med he started after his allo transplant that he should take twice a day. After several days it was still too high and he had not taken any more. That was a big concern. It took 2 days to get enough transfusions and numbers right to have the endoscopy. I was literally with him in the bay waiting for the procedure when they got a call saying platelets still weren't high enough. I told the dr I was not comfortable with it being done and luckily he agreed. The endoscopy was done and results were some moderate inflammation with GVH in his stomach. Kind of sucks, but is treated with steroids and is usually not a huge deal. It seems to be under control now.

After being here a day John started hallucinating a little - like when he was funny on Benadryl. It would come and go. Every one figured it was just extra toxins from his kidneys not working. For a short while it was funny. Then he started talking nonsense a lot. Then he was seeing things.  After about 2 days nothing was funny about it. He had rarely any real John in him and he was sleeping a ton and never made sense. We all realized his mental state was now a big concern. And on top of that his liver function was getting worse and worse. Every day was so so hard and I told myself  "tomorrow will be better". And every tomorrow brought worse news. Every day was awful. It felt like anything that could go wrong was going wrong. The liver seems to be the worst place to have issues. It is a pretty hearty organ though.

John was here for his birthday and missed the whole family reunion. Everyone came to say hi to him on his birthday though. I think it cheered him up a little. He actually asked me to not bring the kids because he didn't want them to see him this way. I brought them anyways just for a few minutes. The kids understand that daddy doesn't feel good and that his body is not processing some of his meds right and he has too many floating around in his body. And that makes him tired and loopy. He also missed his bone marrow drive that he has been so so excited about. On the day of he said "oh ya, I forgot that was today". Because of the GVH in his stomach he was not allowed to eat, only drink. So I brought him snapples and dr pepper for his birthday. That night he actually called me (which surprised me that he was able to focus enough to do that). But he asked me why I forgot about him and it broke my heart. By this point we actually had a family member here 24/7. I had been here all day and he did not remember that.

If I can remember right he has had an endoscopy, and MRI on his brain twice, an MRA, a liver biopsy, an ultrasound on his liver twice,  and now has a feeding tube in (actually twice because the first one got clogged). And just a side not, watching your husband get a feeding tube in in is hell when he can't communicate and you have to try and do it for him. Oh wait, he has also had a spinal tap and an EEG.

So, between the kidneys failing, GVH in stomach, liver failing and Johns mental state I feel like at times it is a living hell. I have never been through anything so hard. This is worse than losing both parents, infertility, failed adoptions and Johns diagnosis. We all believe that John can hear and understand everything. But his brain is being slow to respond. On paper he does not look too bad. His numbers are all ok. Everything is moving in the right direction. His kidneys are fine, his stomach GVH seems to be under control. Actually just got results of liver biopsy and there is nothing there to be concerned about. No GVH and no VOD. That is great news!!! Problem is we are waiting for these meds to clear through his liver and for John to come back to us.

It is literally hell to watch your spouse like this. He can't shower himself or dress him self. Physical therapy comes every day just to help him walk one short lap. Last night I decided to try communicating with some sign language and "squeeze my hand if ..."  And most of the time it works. Sometimes he will roll his eyes at me if I ask a stupid question or laugh or smile. Last night when I started that he started talking too. It lasted about an hour and he was all smiles and telling jokes. I knew it wouldn't last but it was so good to see a little of John back for a while. This is so so exhausting for all of us. I am sure John feels like he is going through the worst of it. Because I really think he hears everything and is so frustrated that be can't answer and communicate back to us. I am tired of trying to help him communicate too. I have never been so scared my whole life. I hate hate seeing John like this. It is the worst feeling ever.

There are many many things I am not blogging about.  Mostly because its is too personal and I don't want to relive how bad it has been. I dread the day John asks me where 2 weeks of his life went. The day I have to relive this and tell him. And I might tell him "you were in and our of it, mostly out. It was super scary and I will let you know when I am ready to talk about it". But on the other hand I can't wait for John to ask me that because that will mean John is back.

I can't say enough fabulous things about every here on east 8!  I love everyone here. Everyone hugs me, nurses bring me chocolate, I can cry to anyone. The Dr's call me at home if I am not here and they have something to tell me, John has had all the best nurses ( Jessica, Ashley, Whitney, John, Kim, Becky, Natalia). Whoever I ask for they give him. Everyone here is fabulous. And these Dr's are trying everything they possibly can to help John. They are so patient and helpful. I really really feel like John is there and he is fine and he will be back soon. We have both had blessings and I was told to be patient (not my favorite thing to be).

Again we have been so blessed with great family, neighbors and friends. Everyone is so helpful and supportive. I actually knew about a month ago that John would be in the hospital right now. I know that sounds weird. But I looked at my calendar and realized that we had a family reunion, then my sister Emily would be here for a few days, then Chris and Emily would be here then the Crans are coming. So, I knew they were all coming because I would need them. I never said anything to John.

I will try to blog more often, because I do want this for John to read too. We will make it through this.