11/15/18 BMT Day +198 Going Home Checklist

So much has happened, so much continues to happen, every day. It really is exciting to watch PROGRESS!

Each morning around 12:30am, Reese has blood drawn. The doctors check various labs and have the results in time for rounds that start around 8:30am. All Reese’s labs have become very stable. We really don’t see too many surprises. As you know, Reese’s hemoglobin drops every 3-4 days and this is when she requires a blood transfusion. The reason for this is multifactorial, but a small piece is likely the amount of blood that is taken from her for these daily tests. The doctors decided that she should keep her OWN blood (instead of giving her someone else’s) and only get the daily blood work 3x a week going forward. This is huge and only possible because they don’t need the labs to make daily decisions, which is another great sign that Reese is stable! So win- blood draws down from 7x a week to 3x!

Reese is eating “meals”. This is a big deal. First, her gut had to heal from the war it fought, against her own t-cells. Now, she has to relearn to enjoy food, and relearn to trust her nausea not to take hold of her. Remember, she hasn’t eaten real meals since April. Both of these are a tall order for a little girl (who still suffers from nausea.) She is making a ton of progress, and her eating is becoming grouped with more variety. Right now her favorite foods are turkey and spaghetti with marinara. Oh, and green olives with pimentos. (I know, how amazing is that, she can eat these things!) Her only medical restriction is dairy.

Reese also got a new bed this week. The brainstorm of our amazing nurses and a total GAME CHANGER. This bed goes all the way down to the floor, so Reese can get in and out by herself. This is amazing from a self reliance, self confidence, physical therapy perspective. Oh, and it’s also really fun. Her and Quinn have been rolling around playing in it- like KIDS. Reese hasn’t “rolled around” in months, and I tell you, rolling brings a lot of giggles and pleasure!

Today I checked off two more items on Reese’s “GOING HOME CHECKLIST”. I made this list with Reese’s nurse practitioner, Stephanie, three weeks ago. There are things that will keep Reese in the hospital- things that she must be able to do (or not do) before she can be discharged. I have been enthusiastically adding a lot of red check marks to this list, the progress is mind blowing.

So now there is only one item left! This is incredible when you consider we just wrote this list three weeks ago… she has come so far so fast. So what is left? ALBUMIN. It’s one thing but it’s a big thing. Reese receives albumin via infusion 2x a day. To go home, she needs to be down to zero. We tried to move her to 1x a day albumin over the weekend and it didn’t work, so we are back up to 2x a day. Why? Why is this happening? This is the million dollar question, and if I had that kind of money laying around I might pay you if you could answer it. We know that she is losing albumin in her gut from the GVHD (that clinically is getting better.) It’s made in the liver, her liver is better. It has a lot to do with nutrition, her nutrition is getting better. But her albumin loss is not (it actually got a little worse this week.) But we are celebrating the rest of the list being covered in red check marks. Go Reese!

Team Reese has been brainstorming new and exciting ways to get moving. As you know, this is a challenge in an isolation unit. Reese and Quinn got their own “badges” like the nurses and they have been decorating them. We polled everyone on the floor to acquire new badge “decorating” ideas so they could fancy up their own. Then we passed out stickers. We did ballet. We went on scavenger hunts for Shopkins around the unit. And of course, we shopped. A body in motion stays in motion. We are trying our best for motion. A couple days ago Reese walked to me without assistance. A good two steps. One of her favorite books comes to mind. I think I can. I think I can. I think I can.

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