Day +25

Raul had dialysis this morning but they did not pull any fluid as his weight was still okay. It also only ran for 3 hours again. His levels are still getting high, but are trending down, which is great! He will get the day off tomorrow. After dialysis he got to see some players from the Gophers hockey team.

Today we stopped his Fentanyl PCA pump as they were running out of line space, so now he will just get doses as needed without the continuous Narcan that was running with the PCA pump to counteract his itching. Because we stopped the Narcan, we now switched his Benadryl back to just as needed doses so that we can use it around the doses of Fentanyl if we need to. If he seems too uncomfortable without the Fentanyl PCA, we can always try to add it back.

The rash on his abdomen already looked more faint today, but his poor face looks rough. He has all these small blisters and it seems itchy. His whole body has been itchy as well, even where there isn't a rash. We should get the GVHD results on Monday. He has not had any fevers in the past 24 hours, which is great news! He also has not thrown up today! He took a long nap in the afternoon, and since then he has been much more awake and more like himself

Day +24

Despite having super swollen hands, Raul actually hadn't gained weight overnight! So he still had dialysis, but they only ran for 3 hours, and did not pull off any extra fluid. He will get dialysis again tomorrow and then hopefully be able to skip Sunday again.

Raul had another high fever this morning, 104.6. His rash on his abdomen was about the same, but his face (and a little on his arms) now has tons of tiny blisters in a somewhat rashy area. Dr. Wagner was up touring some hospital benefactors, so came in to take a peek. He did think it could be GVHD, so Raul had a biopsy on his abdomen to check, and in the meantime they started both IV and topical steroids. If it comes back negative and turns out to be viral, then they can just wean the steroids much sooner. 

They also changed around some of his antibiotics and he will be getting clindamycin instead of vanco, as the bacteria that showed from the line culture was susceptible to that and it is easier on the kidneys! We are still playing around with his nausea and itch medications, as those have been pretty big issues lately. 

I realized I hadn't posted his labs yesterday, so will post both today:
WBC:
3.7 (10/29)
4 (10/30)
ANC:
2.3 (10/29)
2.8 (10/30)

Day +23

Raul's kidney function numbers were quite high today, so he had dialysis as planned. Oddly his weight wasn't too bad. The good news was that he had two good wet diapers during dialysis! His kidneys are still having a very hard time, but the urine is a good sign that they are still at least trying to function when he doesn't have dialysis. 

Raul also had a rash on his belly and a bit on his face today, which could either be from the virus they found yesterday or graft vs. host disease. We are hoping it is viral, but if it was GVHD of the skin it should be easy to manage and would actually be a good sign of his engraftment. His engraftment will be checked around day +30 (next week). 

Today was Halloween at the hospital, but unfortunately Raul wasn't feeling well today. He did put on his policeman costume briefly, and wore a pumpkin shirt the rest of the time. In the middle of the day they had reverse trick or treating where two groups came around to all the doors with treats (balloons and goodie bags). We also briefly checked out a Halloween party downstairs in the afternoon, and Raul got a fire hat there. 

When we came back up from the party we checked his temperature and it was 104.5! He had been pretty nauseas all day, and fevers always seem to make his nausea worse, so he threw up a lot this afternoon/evening. He was super itchy today too, and just generally felt crummy. It is possible the high fever and rash are related, but we don't know for sure.

Day +22

Raul got the day off from dialysis today! His weight was still pretty good for him, and his labs were high but good enough to wait one more day. He will likely need dialysis Thursday-Saturday, and then we can hopefully skip Sunday.

I found out last night that one of his blood cultures from just one lumen the day before had come back positive. Because of this, they gave him one dose of vanco last night. Vanco is pretty tough on the kidneys, and due to his kidney function his vanco level was high after just one dose so he did not get any more today (yesterday's dose is still effective). We had to use vanco as it would be one of the only options if his current antibiotics were not effective against the bacteria. Luckily all cultures done since the positive one was taken are showing as negative, so it may have just been a skin contaminate.

We also found out today that one of his old viruses has been reactivated by the transplant process (the virus that causes roseola), but we do not need to do anything about it at this time. They will check a level weekly to monitor it. If he was to become symptomatic it could cause a fever and rash.

This morning Raul got to see a state trooper and Smokey the Bear. He put on his police hat to see them, and got a goodie bag, which was exciting! He also did well with school this morning. They did a bit of math, some reading, and some matching. He did OT in the afternoon and played a few games, but wasn't too happy about stretching his arms. This evening my mom brought over a huge stack of birthday presents that were from the Ronald McDonald House staff! Raul was very excited to have another set of presents to open!

WBC: 4.3
ANC: 2.8

Day +21

Dialysis came early this morning, so Raul was up in time for the teacher to come. He was pretty grumpy, but she was able to stay for the full hour of school time, at least. In the later afternoon he had PT, and did surprisingly well for having not napped all day!
 

Raul's kidney function levels and weight were not too bad, so unless anything wonky happens, the plan is to skip dialysis tomorrow and go back to it on Thursday. Because the GCSF was stopped Raul's WBC/ANC dropped a little, but they were still at good levels. His bilirubin continues to drop (4.5), which is a good indicator that the VOD is improving! He is about halfway through the initial regimen of the medication for the VOD. After 3 weeks they will reassess.

This afternoon we went to a party downstairs with players from the Vikings and food from Chili's. We got to meet the players, meet some of the hospital therapy dogs, see a magician, and get tons of food to bring back upstairs. When he first saw the person in the cowboy costume he said, "hey, man" haha. He also told the football players that he was 6 and asked how old they were. Later there was also a showing of Hotel Transylvania in the auditorium, but Raul didn't want to watch it so I just grabbed a root beer float and we headed back to the room!

WBC: 4.6
ANC: 2.5

Day +20

Raul slept in this morning, so did not do school. Though we did have to get him up shortly after that to be weighed for dialysis. His kidney function numbers had not jumped quite as high as I thought they might, which was good news. His weight was pretty high, but luckily today they didn't bring him quite as low during dialysis. The best news was that during dialysis he peed! I think he peed more in that one diaper than he had the past week combined! He will have dialysis tomorrow, and then we will decide about Wednesday on Wednesday morning.

His bilirubin went down again (5.7/4.8), and WBC/ANC went up, so all good news! If not for the kidney/liver issues he would probably be being discharged, but given those complications (and his recurring fevers), we likely have at least a couple more weeks inpatient. He is definitely starting to look less yellow, which is good. We re-started his formula today at 5ml an hour to help both his GI system and his liver. They had to stop his lipids last night as his triglycerides got really high, so hopefully we will be able to increase his formula later this week and not even need the lipids added back.

Tonight we went downstairs to a Halloween party where we got to decorate two cupcakes, make a pumpkin craft, and Raul got to pick out a new blanket (with vehicles of course). It was nice to get out of the room, although Raul really doesn't like wearing the mask so that made him a little grumpy. There is another event tomorrow night, so we will probably go down again!

WBC: 8.8
ANC: 6.7

Day +19

No school, dialysis, or full bandage change today, so we had a nice relaxing day! We did have to do both his central line dressings though, as when I went to change his shirt one had come totally off and the other was almost off. His regular line appeared to be moving in and out a bit, so we did another x-ray to check the line placement, and luckily it was okay.

Raul had tried to get up at 6 this morning, but thankfully fell back to sleep a little after 7 and slept for a couple more hours! Mid-morning we went out in the hall for 15 minutes, then when we came back to the room Raul opted to stay in his stroller to play on his iPad for a couple more hours! While he doesn't sit totally straight in his stroller, it is much better than sitting on the bed. Late in the afternoon he slept for a few hours, and is now back sitting up in bed. He is still not really up for playing with his toys often, but does play with his iPad and occasionally his toys. PT tried to get him to play with a toy basketball hoop, but he was not impressed by that (he did do the minimum ten throws).

Today was Raul's last day of GCSF as his ANC has been above 2.5 for three days. His bilirubin today was technically slightly higher, but the team said that because of things like fluid shift they consider it to be the same. The medicine they added yesterday seems to be helping, as he did not have any bloody vomit or bloody noses today! No need for blood or platelets today! I was hoping we might get some pee today since he didn't have dialysis, but that hasn't happened yet. They put in orders today for him to get dialysis tomorrow, and then after that we will see if it stays as daily or not. His weight only raised .1kg from his morning weight to evening weight today, which is great!

WBC: 7.2
ANC: 4
*Both within normal range*