Still in the Hospital

I woke up today on the couch in a hospital room with my daughter in the hospital bed attached to an IV pole. I thought I was dreaming. But, no. Can you say? Reality.



Welcome to month number 7 of feeling like my life is tumbling by in a washing machine.



Hannah's fever has been down for a few days. Rash, itching & irritability has been off the charts awful. Itching, especially. Hannah gets about 50mg of Benadryl every 8 hours to help with the itching



The CT Scan showed that her lungs are improved from the pneumonia but not 100% cleared up.



Hannah will probably get discharged from the hospital at the end of this week ... and then the "wait & see" starts all over again with this round of treatment. I think we are giving this about 6 - 12 weeks to kick in before we try anything else ... this treatment just takes TIME to work. It is not the kind of thing that produces results immediately after treatment.



We will most likely stay here for the summer waiting to see if this treatment kicks in. We are able to stay across the street at the Children's Inn (for free) & Lily will be able to be here with us (Jim is going to bring her in about 2 weeks!). As much as I'd love to just go home, I know that if we go home & Hannah has complications, she will end up in the hospital there (like she has for the past 7 months!). If we stay here & have complications she will be hospitalized here but there is just no comparison ... from things like: a window in our room to room service to yummy food to a medical team that deals with hundreds of Aplastic Anemia patients every year. It is just such a better set up ... even though we love Kaiser in Fontana ...and we love our nurses! I feel such peace about staying ... at least until we know for sure if this treatment is working or if we have to do something else.



I'd love to fly back by myself to California & drive back East so we could have my car while we are here. Honestly, I think the long road trip would be therapy for me after all these months - the long, long, long drive with lots of hours alone to think & process is probably way more of what I need right now than really needing my car out here. Just the thought of it ...... aaaah.



All God's best from the NIH!!!