Sunday, December 20, 2015

Days +72-+76

This morning we put on Christmas music and did some more decorating for Christmas; our room is now very festive! Raul is still not wanting to sit up or get out of bed, but he is more talkative, which is great! And we even got some snowplow pajamas and Santa socks on him today (he has been rejecting clothes lately). Yesterday, while my mom stayed with Raul, I got to go back to the Ronald McDonald House to "shop" for Raul's Christmas presents. I think he will be very happy on Christmas! I also got to spend some time with an EB family who has just arrived for bone marrow transplant. They will hopefully be admitted for transplant later this week.

Medically, things are more or less the same. Still having mysterious fevers, getting dialysis four days a week, needing lots of platelets/blood. The good news is he has not needed the blow by oxygen in several days now, not even while sleeping. His chest CT looked better on Friday than it had the past few times. He is also continuing to pee. Who knew wet diapers would be so exciting!

Unfortunately, he is also peeing some blood. After an ultrasound Friday they determined that he has hemorrhagic cystitis in his bladder, which is causing blood and small clots, and is most likely caused by his BK virus (his viral level has gone down though, thankfully). At this time we are just watching it, as the clots are not blocking the flow of his urine. 

We are all a bit disappointed/frustrated that we are not seeing a quicker resolution to his symptoms of aHUS/TTP with the Soliris, but we will give it a few more weeks before looking into other options. The length it takes to see a change can really vary, and it seems that we are just not on the quick end of the spectrum! There are some positive changes with his labs related to the complement levels, but we are just not seeing much change in his actual symptoms yet.

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