He's out, he's out, he's out of the hospital!!!

We are so excited, you can't even imagine. I think the longest that I have been away from my son is one week and now it has been almost 3 weeks. And it's not just being away, it's the fact that there was no way that I could go see him. Covid 19 stinks! But then, on the other hand, it was probably keeping him safer. 

I got a few medical updates from him since he has gotten out of the hospital. Evidently one time he was low on Magnesium, so they gave him some. Otherwise he was taking a couple anti-fungal's to help keep him from getting infections.  I asked him about his side effects from the chemo. He said that overall he didn't have much. He said that (maybe) one morning that he may have felt a little nauseous, but they gave him something for it and the feeling never came back. He also had started to get a ridge around the edge of his tongue which he swished multiple times in the day with a saline (salty) solution and that helped and now it is almost entirely gone. He never got any blisters in his mouth or his throat (thank goodness!!). He lost all of his facial hair and now the hair on his head is starting to fall out as well. He kind of looks like he was attacked by a wild animal! LOL! I will post some pics of his head. I did notice that where the hair falls out, that it is a little rashy looking. I guess that is a common side effect. Jacob said that his appetite had never gone away. In fact, he is hungry all the time! LOL! But he did lose a few pounds in this process, not sure exactly why that is. 

He was supposed to get let out of the hospital yesterday morning after a last lab draw, but unfortunately his creatinine had creeped up. His normal is usually around 1, but it went up to 1.42. So, they wanted  him to do another draw at 3pm to check the level before they sent him home (hotel). I made sure that he drank lots of water and peed frequently. When they did the afternoon draw his creatinine went down to 1.22 and they gave the go ahead to release him as long as he came back in today to get another lab draw.  This morning it was still at 1.2. Could be that the chemo may have made him a bit dehydrated. I did notice that his face is extremely dry looking.  

The other lab that we were keeping an eye on was his platelet counts, which is his immunity. I guess normal counts run from 180-200. They never wanted to see the count go below 10 or he would have had to have a transfusion. His levels got down to 17 which is perfect for the stem cell transplant. Yesterday his platelets were at 24 and this morning they were at 39!! He is on the mends. Hopefully it stays that way. The coordinator said it could drop again, we never know. But we will be extremely careful on our end.

My husband was able to see him last night and this morning. He decided to head home so that that was one less person being around close proximity to Jacob. Probably a good idea. I will miss him dearly! It has been so nice having him here with me while Jacob was in the hospital. Hopefully I can sleep tonight, but probably not.

Jacob is required to go in once a week to get labs done and see the coordinating doctor, Dr Barshop, and the stem cell transplant doctor. They will keep a close eye on his levels, see how he is feeling and making sure that everything is going well. I appreciate that!

While Jacob was in the hospital he received a few cards from people with Cystinosis and family members of someone with Cystinosis. He wants everyone to know that he really appreciated them. It touched his heart and mine. I almost cried each time we received a letter. It is so thoughtful for people to take time out of their busy day for him. Thank you!

Hopefully my posts from now on will be terribly boring! Hopefully! But I will keep everyone updated if there are any changes. I will even let you know the boring stuff! Ha Ha Ha

Rocky