11/26/18 BMT Day +209 Bolus Feeds

Eating, drinking, and being merry!

Reese is eating more than half of her calories these days. Her goal is 1200 calories a day. There is no way this little girl ever ate 1200 calories in life (excluding birthday party days that served cake and ice cream) but this goal is necessary to give her the fuel she needs to heal. So she eats between 700-900 calories a day and gets the rest in “bolus feeds”. A bolus feed is formula that is put through her NG tube over 1 hour. She gets 145 ml. This number is astounding, truly a miracle. Reese stopped eating (the way we think of eating) after conditioning in late April. Then she went on TPN (total parenteral nutrition) in mid May while she was fighting VOD. She started “eating” again at the end of May for about a week or so. Then her gvhd hit on June 1 and she was done with food for many months. She was on complete TPN in June, July, August, September, and part of October. During these grueling months we attempted formula feeds many times. In August we began for a week with 2ml (half a teaspoon) an hour trickling into her damaged gut. We got up to 6ml an hour before we hit a road block and had to start over. Then we started mixing the formula with Pedialyte, to try to “stretch” her stomach to be able to handle more than a couple teaspoons an hour. We started over with 5ml an hour again in September, and then abandoned NG feeds for about a month when she couldn’t tolerate. In mid October we began to make headway, with a big push to get her off TPN and onto feedings with some calories by mouth. We began with 5ml, then 10, 15, 20… it was working. We got her off TPN on October 25 with constant NG feeds at 30ml an hour. Thirty seemed like so many, her gut was so damaged, I was so thankful. As you know, the past month has been Reese’s month. So many incredible changes are happening in her little body as she rapidly gets better. Fast forward to now, the end of November, and she is tolerating 145ml an hour bolus feeds and EATING like a four-year-old. What a complete blessing.

Reese’s TMA is under control! Her platelets are 102 and she is only needing blood transfusions once a week. Her d-dimers and LDH are also normal. This is incredible! Her TMA medicine, Ecluzimab, is being cut in half this week and then will continue this way for two more weeks before they plan to discontinue it. What a feat!!

When Reese is discharged, I will be administering her feeds and meds along with other things. Yes. I said DISCHARGED. Can you believe this is a paragraph in Reese’s story, after 7+ months of inpatient?? Today, our outpatient coordinator stopped by to tell me about a training I need to take on Thursday. It takes my breath away to type that. All of the balls are rolling toward getting Reese out of the hospital in December. I have to stop here and say that there is a potential road block, as anyone who is following her story knows. Albumin. Each day Reese receives albumin intravenously. She needs to be in the hospital for this to happen. Albumin is a protein that helps fluid stay in the veins. Reese’s levels are low and have been supplemented for months. Why are they still low? Most likely because her gut is still leaking this protein. The doctors are cutting her dose in half tomorrow. Then they will discontinue it. And we will see what happens. This is what we want to happen: it will stay over 2.0 (normal is 3.5-5.5.) We want Reese’s body to make enough, on it’s own, to keep her safe. The doctors are very hopeful that this will be the case. I ask you to pray that this is the case. We will have our first glimpse of the results of this albumin trial on Thursday, when her labs are drawn again. I doubt I will be able to sleep at all that night!

In the meantime, the doctors are planning as if the albumin taper will go well, and so are we! When Reese is released, we will immediately outgrow our room at the Family House. This room that has been inhabited by my parents, husband, children, mother-in-law…. throughout our stay in SF. So once we get THE DATE I will be renting an additional apartment somewhere south of the hospital. A furnished, short-term rental (not as easy as it sounds, but happy to have the opportunity to do it!) From discharge we should remain in SF for anywhere between 2 – 6 months.

Reese understands all of this and is busy planning her BELL RINGING ceremony with me and Quinn. Today, we snuck out of the unit (for the second time), crossing the double doors to watch a baby ring the bell. I am so excited that Reese should be next!! Thank God for this miracle.

I end with Father Dan’s prayer. Our spiritual guide, God’s Helper.

Lord, God of Mercy and Compassion, you have done great things in helping Reese to overcome JMML, CMV and so many other challenges on this Journey to Full Healing. Please, Lord – guide and inspire her doctors to resolve this albumin issue. May this Little Angel, Reese, soon be ready to walk through those hospital doors so that her wonderful family can be reunited under one roof. This is the Christmas Gift that our hearts deeply long for. We pray this in your holy name, Lord Jesus. Amen!

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