Tuesday, October 13, 2015

Day +7

No dialysis today. In the morning his numbers were still up a little, but his weight was down, he wasn't puffy, and he was peeing better. In the evening his numbers were higher and he hadn't peed in a while so they gave him a fluid bolus. His weight is only up .2kg, so we will see how he does overnight and they will decide about dialysis for tomorrow in the morning. His bilirubin was even more elevated today, so he was even more jaundiced, but that should hopefully start trending back down soon.

Early in the morning Raul got a platelet transfusion as his PLT count was down to 9 (he normally runs higher than normal, usually between 500-1,000). I was worried that his wounds would bleed a lot during his bandage change, so we had thrombin on hand, but luckily it was not a problem. We are seeing a bit of the temporary improvement in the skin due to chemo (it is anti-inflammatory), so that is nice! He has been having some bleeding in his mouth, throat, etc., due to the mucositis. He is vomiting some, but we are venting his g-tube to help. He may get more platelets overnight tonight.

His breathing has been much more comfortable today now that he has been on high flow for 24 hours. They can now hear good air flow at the bottom of his lungs, which is great. This morning we went down for a chest CT to check for fluid and/or infection, which was quite a project with all his current pumps, monitors, and oxygen! He got to stay in his regular hospital bed to go down, which was nice. Luckily his scan showed no infection and no large areas of fluid. Since his WBC has not come back yet after transplant (still .1), this was the only way to rule out infection.

Raul had the teacher come yesterday and today, and now there is no school for the rest of the week (they follow the local public school calendar). Yesterday he did a little paining on a pumpkin picture, and today he did a bit on a scarecrow picture. Yesterday the teacher showed us a new website where we can find books, and Raul impressed her by knowing all the words in one book and most of the words in a second! He wasn't up to reading today, so she read him Katy and the Big Snow. He gets 30 minutes a day right now, but the teacher said she might bump it up to 60 minutes when he is feeling better.

In the afternoon I noticed that his hair was starting to fall out on his pillow and on the gauze around his high flow cannula. Right now it is just a small amount, but once it really starts coming out we will probably cut his hair. He knew this would happen, and has not been worried about it. He says he will look like Caillou :)

Tonight there was dinner provided at the hospital, so Raul's nurse sat with him for a few minutes while I ran down to grab food. At this point he can't really be left alone, and with the bleeding/vomiting I wouldn't be comfortable with a hospital volunteer, so it was nice to have the nurse be able to sit with him so I could grab dinner!

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