Wednesday, December 9, 2015

Day +64

Today was a pretty low key day, with no major changes. Raul had dialysis in the morning for four hours, then took a long nap. He interacted a bit more with the teacher, which was nice. His blood pressures have been holding up great since we came back from the PICU. So far today he has only had one fever, 103.6, and it came down with Tylenol. Overnight last night he didn't have any high fevers. We are also seeing completely normal temps. now between fevers, which we hadn't seen in a long time! He is needing the blow by oxygen on and off while sleeping, but that is likely mostly due to him not sitting up much recently. 

We learned from the med. company that the Soliris can start making a difference after even just one dose. We are cautiously optimistic that we may be seeing positive changes, as his Platelet count is higher this afternoon than it has been in a long time and his Hemoglobin barely dropped despite not getting any blood today. His next dose will be Friday. Soliris was known as the world's most expensive medication until this year, when it fell to second place. Thankfully our insurance is covering it at this time! 

Dr. Tolar stopped by this evening and said it was a very good sign that we are seeing some areas of Raul's skin look stronger; I will send him photos after his next bandage change. He sounded hopeful that we are headed in the right direction, and reminded me to be patient :)

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