Day +10…numbers looking better!

Ginger writes:

Today was pretty eventful. Ian’s ANC (absolute neutrophil count – the number that means when we can come out of BMT isolation to our room) was 450, up from 207 yesterday. Once the ANC is over 500 for three consecutive days, we no longer have to stay in our room and he is at a lower risk of infection. We were very excited that his numbers are coming up, because it means that he is probably starting to have engraftment (Caid’s cells starting to work).

He has been having super high blood pressure for a while now, and they have been trying several drugs to treat it, but nothing has worked yet to bring it down significantly. The high blood pressure is caused from cyclosporine (an immune suppressant given to prevent graft vs. host) and also from the steroids he is on. The steroids and cyclosporine make him very agitated and the cyclosporine causes him itching and rash, which they are treating with Benadryl, so we bounce between being drugged to sleep and roid rage.

itchy cyclosporine rash

Ian still has some mouth sores, but they are getting better and he ate a few bites of egg and banana tonight, which was good. He is still receiving IV nutrition, but anything he can eat will help to keep his gut functioning for when he feels better. We are experimenting with weaning the pain medication drip very slowly, they lowered the dose from .7 to .6 micrograms today, and we hope he will tolerate .5 tomorrow.

3 thoughts on “Day +10…numbers looking better!

  1. We are sending you lots of positive thoughts!! And as fellow hlh parents we will continue to follow your family’s journey and please reach out to us if you have any questions. Also, on facebook there is an hlh family page which is very helpful, i recommend joining. things can get hard when walking up this mountain but when they do remind yourself of the beautiful view when you get to the top.

    The Gilliers
    Proud parents of Miabelle, an HLH warrior

  2. We are keeping our fingers crossed and sending you lots of positive thoughts for your kids, As fellow HLH parents we know how hard this road can be so please reach out to us with any questions gillierfamily@gmail.com and know that there is a HLH Family page on Facebook for parents with HLH children (the support of fellow HLH parents is very helpful). the road to the top of this mountain can get rough but when walking up the incline remind yourself constantly how beautiful the view will be when you reach the top. We wish you all the best!!!!!!!!!

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