11/20/18 BMT Day +203 Seven Immunosuppressants

Notice anything in the picture?
It’s not the flamingo ensemble (although this new obsession with the pink bird is just fantastic.) It’s not the fact that she is able to sleep on her stomach (but that is also incredible.) Yep! That’s right. No IV tubing!!! It’s true. As of today, Reese is off ALL daily IV meds except for Albumin at 6:30am. So, for the first night in 7 months, she gets to sleep NOT tangled up in IV tubing!! No alarms going off all night as meds end!! I am so happy for her, this milestone is so so amazing.

So, what happened to all of her daily IV meds? Remember, at one point she had so many that she exceeded her double lumen broviac. Then our skilled nurses spent many months trying to fit all of her meds in, it was a challenge. Once we figured out that Reese’s gut is absorbing, over the past month all of these meds have been switched to oral. She still has a number of infusions that are 1x and 2x weekly. These have been moved to her “clinic days” on Mondays and Thursdays. So she has her IV tree on these days, getting lots of meds. When she is discharged, this will continue in clinic. There were so many nights this day seemed so impossible. So many things had to happen to get my very sick girl here today. And we are HERE! She is sustaining herself without being hooked up to an IV. Praise God and the incredible nurses and doctors we are blessed with.

Our dream discharge date (of any-day-before-Christmas) continues to be very realistic and possible. We are celebrating this milestone and praying that Reese can walk out of this room in the next month, through the double doors, into a hallway she hasn’t set foot in since April. Down this hallway is a bell. The bell that overlooks the bay. I can see it now!!

Reese is currently on seven immunosuppressants (there have been eight.) Vedolizumab, Jakafi, infliximab, Anakinra (a shot), steroids, budescenide, and ecluzimab. All of these are to conquer her gut gvhd except ecluzimab, this is for TMA. This is seriously a lot and too many. Two would be a lot. Right now the doctors are trying to get her steroids down to a safer number. We are almost there and this is the most important, so everything else stays until this is accomplished. They do NOT want to muddy the picture. Once the steroids are at a safer number, they will decide how to proceed. Maybe they will stay steady with the steroids and then wean or eliminate a different med. It is an art, deciding how to manage this. And we are thankful for the skill and knowledge of these doctors who will have to orchestrate this dangerous dance. And it is dangerous, because a flare is always a possibility. A possibility that keeps me up at night, God I pray that Reese is free of complications and she can just get… well. These seven immunosuppressants and the need to taper/eliminate them is a big part of the reason Reese will not be seeing home for quite some time. After Reese is discharged, she will need to remain here, in San Francisco, for an additional 2 – 6 months. From what I understand, two months is the best case scenario and unlikely… and then additional time leaves room for additional complications. I had to give up control (or the control I lived my life believing I had) a year ago. Since then, it is my job to listen and do my very best to be strong and positive for Reese. She is fighting the unimaginable battle, this tough preschooler of mine. I am just here to do everything I can to ensure she gets the very best.

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