5/19/19 Surgery

Reese had a fantastic week.. it started with her best labs in a year!! Her albumin slid into NORMAL at 3.3 and her hemoglobin jumped to 11! We are very excited about both of these, because, as you know, they have both been lagging since transplant. Her gut is healing every day, I dreamed of these things for months and I make sure that her doctors at UCSF know all about it. They saved her and now she is moving into NORMAL! Go Reese!

This week, I am asking you to pray for Reese as she will be going inpatient at Lurie for surgery. Reese has not been inpatient since late January and this is going to be very traumatic for her. We had a taste of this when our new dermatologist made her wear a hospital gown last week and she started screaming. This little girl lived in an isolation unit for 8 months, her fear is real and deserved. We have been planning to have Reese’s central line (double lumen broviac) replaced with a port for sometime. A port is under the skin and much safer for an increasingly active girl like Reese. This is an outpatient surgery and Reese very much wants to have this done. It means exciting things for her like swimming and the elimination of our daily line care. What changed is that our team at Lurie is adding on an upper and lower scope to this procedure. This is something that has never been done, even in the darkest and most trying days, as it was always determined that the reward did not outweigh the risk for our immunocompromised child. As you can imagine, we have fought this scope, as the need for it isn’t really in line with our former thinking at UCSF. I have been up nights for a week, sick, over this decision. First I refused. My new doctors insisted that it is completely necessary. Then I refused again. The scheduling of the surgery went forward, I received calls from anesthesia and GI. I slept on it some more (there is not “sleeping on it”, by the way. That’s a terrible term for thinking on a big decision.) After incredible amount of thought, we are going ahead with the scope. Not because we believe in it, but because we have to believe in our new doctors. As they will be heading up Reese’s care for now and in her future. So, if they need this scope to proceed, Reese needs this scope. We will go inpatient to prep for two days and hopefully be discharged with no complications after she recovers on Thursday. Just to add insult to injury, she will require the placement of an NG feeding tube to get the formulas for the scope into her.. this is something she fought so hard to get rid of, for many many many months. I will do my very best to sell this, to make it positive, to get her to “buy in” as she always does, she is amazing. Here we go.

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