Monday, December 28, 2015

Day +83

Things have mostly been the same the past few days. Raul is getting dialysis four days a week still; usually three days of four hour runs and one day of a three hour run. He is still peeing, though it hasn't increased. We are hoping his BUN won't jump as high between dialysis days once we get him to take more formula vs. TPN. 

On Wednesday Raul will be switching his G tube to a GJ tube. His vomiting has increased recently, and we want him to be able to tolerate more formula as it will help his liver and kidneys. Raul's bilirubin has been high again recently, which is why he looks jaundiced in photos. It was up to 10 at the end of last week, but this morning was back down to 6.7, which was a relief!
Raul is still getting the Soliris medication every Friday. It is hard to tell if it is helping yet, but he did go 4 days between blood transfusions and did not need platelets today. If he has aHUS, infection can worsen symptoms, so we may have seen some of that with his positive blood culture and worsening symptoms around that. 

He has not had any more positive blood cultures, though they are still working on some antibiotic sensitivities for the one he did have as it was an unusual type of staph. His fevers have improved with vanco, but he is still having them quite often. They also sent off a new blood culture today for some rare bacteria. 

Tonight Raul got a short pass for us to go for a drive and look at Christmas lights. Raul has been asking to go on a drive for a few days, so was pretty excited when they said yes! The best part was that we got to see a fire truck back into a fire station, then pulled up to talk to the firemen for a few minutes. They even turned on the flashing lights for Raul! We are hoping to be able to go back another time to go inside the fire station and see their trucks (it was snowing pretty hard and we needed to get him back).

Checking out the lights on the firetruck


  1. Caroline, thank you for continuing to share Raul's journey, you are a wonderful caregiver. Give our love to the little boy, Uncle John is glad he still loves cars and trucks! Love to you all, and I hope you are able to have some "you" time now and then.

  2. I feel badly that I refer to you only as Raul's caregiver, you are his mom first and foremost