8/22/18 BMT Day +112 Slowly Chipping Away at TPN

Onward and upward! My little hero is making great things happen here at UCSF.
Tomorrow is another steroid wean- to 1.0 !!! This safe(r) dose has been a goal for Reese for so long and we are finally here! Believe me, we are so appreciative and we know how blessed we are. The doctors are watching each steroid drop carefully and so far things are going very smoothly. In theory, as the steroid dose goes down, some of her other steroid induced problems should start to melt away also.

Speaking of these problems, last week THREE viruses reactivated in Reese’s little body. This is what drove our doctor’s decision to start dropping her steroid dose twice a week, instead of once. Well, as of today, Reese has squashed two of those viruses!! Only one remains, CMV, which has been haunting her since May and will likely stick around until her t cells are no longer suppressed and can do their job. From what I’ve been told, it usually takes antibiotics + t cell function to lick it completely.
Reese’s intake has also increased, which means that we are now slowly chipping away at her TPN! (cheering!!) She is being fed very broken down formula through her NG tube (nose feeding tube) and we have been working on helping her learn to tolerate it since July 31. We needed to get to 10ml an hour to eliminate some TPN and we are on 15ml today and moving up to 20ml tomorrow. This is huge! She is also enjoying a more expansive menu, she added sweet potatoes and pears to it the last two days. It is such a joy for her to sit down to a meal with her sisters and participate. She is NOT jealous of their meal… she is just so grateful to have her own food and choice.

Reese rises around 5am each day. This can’t be helped because of her intense med schedule… lasix is required around this time and when a girls gotta go… well, you know. And during the 5:00 hour she does, so we are up. Reese knows that that a body that is moving feels better, so we move! By shift change at 7am this little girl has eaten ice chips, played, bathed, shopped at her store, eaten, and played some more. (This is not the case around here, the night shift nurses find it pretty entertaining when Reese walks into the hallway with her unicorn wallet to shop at 6:30am..)

Anyone who knows me knows that I want things done yesterday. If something I don’t like is coming, I want to do it that moment, and get it over with. The same goes for things I want, I want them now. Well, I have learned patience but I still like to put yucky things in the past. This is Reese, and it has served her well here. When something negative is approaching (which sadly, happens often) Reese will offer herself up on the spot, to get it over with. Tonight, my sweet girl lost her nose tube while vomiting. Poor thing, it should have been traumatic. Instead, she asked for a new one, immediately. Why? Two reasons. To get it over with and so she wouldn’t be hungry at night. Now, when a nurse places the tube, she pushes it through your nose, down your throat, into your gut. This does NOT go well with four-year-olds (or anyone, really) It is known as one of the more horrific things that has to be done, very dramatic, (I will skip the details of exactly why… but you can guess…) Anyway, Reese closed her eyes, drank it down with water, no drama, and hugged me the whole time. The nurses told her she is their hero. She is mine, too.

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