Tuesday, November 10, 2015

Day +34/Day +35

Day +34
Raul had dialysis in the afternoon today. He got platelets in the morning and a blood transfusion during dialysis. This past week we were able to dialysis every other day, which is great! Though when he goes to outpatient dialysis it will likely have to be Monday/Wednesday/Friday/Saturday, as he is not yet able to go two days between dialysis runs and they do not run on Sundays. The good news is that he has been peeing pretty well every day for the past few days!

His fevers had been looking a bit better earlier today, but then he spiked to 104 right before dialysis. He will need to be fever free for at least 48 hours before he can be discharged, so it may be a while yet, but we are hoping they will go away soon! We increased Raul's feeds to 25ml/hr this afternoon. He had been doing well with it, but then at the end of dialysis started vomiting and had major diarrhea.

We had a very rough night due to persistent high fevers and gagging/vomiting. We ended up giving IV tylenol as he could not keep the oral tylenol down and when he has fevers he is always extra nauseated. We stopped his formula, as we were not even having luck getting small volumes of medicine to stay down.

WBC: 5.7
ANC: 2.6

Day +35
Today Raul has continued to have high fevers and gagging/vomiting, so we still have his formula off. This morning he got another chest CT, which showed micro-nodules like before, so we are doing another course of Azithromycin in case that is the source of his fevers. His blood cultures have all been negative so far, and his skin does not look infected. He did start to show a rash on his face/neck again today, so I am putting the steroid cream on that and we are just watching it for now.

They did start him back on Vancomycin. It is needed at this point, but unfortunate as it will negatively impact his kidneys. They also gave him a dose of Celebrex to see if it helps the fevers, which is also hard on the kidneys. He did not have dialysis today, but will most likely need it tomorrow. However, if his numbers are only moderately high they will wait until Thursday, as they don't like to run dialysis when the child has high fevers/possible infection. 

It has now been a month since he started dialysis, but his case is still considered to be acute kidney injury/failure. They will repeat an ultrasound at 6-8 weeks and again at 3 months. If those ultrasounds both show shrinking kidneys and his status has not improved, he would then be considered to have chronic kidney failure. We are hopeful that his kidneys will start functioning better soon!

Raul has been pretty miserable, which is hard to see, but I did still see a few smiles today. He has napped twice today, and the rest of the time mostly been sort of half awake. He did talk to the teacher a little this morning, played on his iPad a few times, and tonight was a bit perkier after his medications for his bandage change. He was not happy to have to go downstairs for the CT scan this morning, but it was good to get him out of the room, and we even got to go without the IV pole. 

WBC: 8.6
ANC: 5.6

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