10/21/18 BMT Day +172 TMA, again

Three days ago on Friday, Reese began NG tube feeds again. An NG tube is a feeding tube that goes through Reese’s nose to her stomach. You may recall a few days ago I said, no thank you. Well, the very next day I was sold on this for a few reasons. Most importantly, eliminating TPN quickly, to benefit her damaged liver. While Reese has been increasing her oral intake at an amazing rate, from 200 calories a day just two weeks ago to 700 now, she needs to hit 1200. Adding NG feeds will hit that goal tomorrow, and her TPN wean will begin tomorrow night! How does Reese feel about this? After I explained the benefits of an NG Tube to her, she thought about it a few minutes, and then said, “Can I get it right now?” And she did, five minutes later. That’s my girl. What sold her exactly? Two things. Sleep (nurses won’t have to change her TPN while she is trying to sleep, one less disturbance) and she will be IV pole FREE a couple hours a day once the TPN is off. Disconnected. She wants both of these freedoms so much! Reese has to lug this pole around all day, every day. She has been disconnected once since May, and this was for the MRI. We simulate “normal” human movement, trying to make her strong again and able to do… well, normal things. The best way to do this is to let her move naturally! I am very excited for the TPN wean to begin tomorrow night. I don’t have info on how long this taper takes, exactly.

Now for the bad news. You may recall me mentioning TMA, the third big complication, the trifecta of transplant related problems (VOD, GVGD, and TMA.) Well, TMA is back on the table for Reese, all of the attending BMT docs are weighing in to decide if they need to begin treating it tomorrow. Of course I am heartbroken at yet another problem my tiny girl has to overcome. The reason there is question is the same reason we have circled this diagnosis for months.. she doesn’t completely meet the criteria, but she has some significant red flags. Why don’t we want to treat, just in case? The medicine is ANOTHER immunosuppressant, and not without side effects, like everything else. So I am awaiting the decision tomorrow. Another big decision that will be made tomorrow is what to do about the biopsies. They aren’t back yet, so they will be back tomorrow (Monday). These will hopefully shed some light on what exactly is going on in Reese’s gut. Big day.

I would like to end with more good news. Reese, my darling girl, my clever and hilariously funny 4-year-old, is back. I’ve said this before… as she heals she is more available to be- herself. She has the strength to be really present. Today I kept thinking to myself, damn I have MISSED her SO MUCH!! I didn’t realize how much I ached for her until I start to see her again. Yes, I have been right next to her throughout, but she was a shell of herself, too damaged and in too much pain, fighting for her life and using every last bit of strength she had for that battle. As she heals, she returns.

Reese had a dream. That dream was CHEESE AND PEAS (with a side of ice cold water. Her own bottle.) We drew this picture, months ago, and it has been hanging on her cabinet. She has asked God for “cheese and peas” many a nights in prayer. Tonight it happened. Cheese (non-dairy), peas (she means edamame), ice cold water (all her own) and a side of olives (just because she CAN!) That’s right Reese, your dreams are coming true!!

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