10/14/19 Ripping the Band Aid Off

My 7:30am breakfast date at Lurie today.

When I taught second graders, one of the reading comprehension skills we conquered was making connections to text. As adults we do this all the time, comparing things in our world to things we already know and understand. I have made reference to this a few times over the past couple years. Sometimes, to try to empathize with Reese, I try to put myself back in a situation that is (vaguely but not nearly as traumatically) bad. Today I got to thinking about how I feel when I take antibiotics. There’s an overarching different feeling in my body when I am taking medication. I strongly dislike it. I think back to the time that amoxicillin gave me vertigo or the awful painkiller I took for one night after my back surgery. Then I thank God that I do not take any medication, this is an incredible blessing. Then I think about my little girl.

I watched these nurses for months, but this did not prepare me for Reese’s medicine schedule upon discharge.

When Reese was inpatient, she was labeled “hard” for many months. That’s right, on the BMT floor each patient was given a simple rating that made it possible to assign nurses correctly. (One nurse could not take on two “hard” patients… so assignments typically went hard/easy or med/med.) Reese was hard for a variety of reasons, one being her intense medicine schedule. Only the most skilled nurses could fit everything she needed into her double lumen broviac in one 24 hour period. All of this medicine was necessary to keep my little girl alive so that her body could heal. And we watched the miracle of health return to my little girl. And I watched these nurses for months, but this did not prepare me for Reese’s medicine schedule upon discharge.

Reese’s discharge medicine schedule

I had heard that if a patient was going to fail at home, it happened in the first week. And the reason was the inability to successfully meet the patient’s medicine needs. On night 1, I looked at all of the paperwork, I browsed the giants bags full of medicine from various pharmacies, and I knew that I could not make one mistake. Because there wasn’t room for mistakes, because my little patient was the one who had to take all of this. So I was going to administer it right. Then I made this google doc and it was my outpatient bible from 12/21 – 10/14. I did not make a mistake.

As the months passed, many medicines were peeled off. I have blogged about each immunosuppressant as it was eliminated, and the joy we all felt each time something toxic was removed from the daily routine. By summer, Reese had really come a long way, those 6 months were full of incredible strides. Not only was my girl feeling better and looking like herself, those t-cells and b-cells were growing, too.

Today, Reese’s doctor took a red pen to her list and eliminated everything.

Over the past couple months, Reese’s medicine schedule has been scaled down to prophylactics. These prophylactics help to prevent viral, bacterial, fungal, & Pneumocystis pneumonia infections, and one for reflux. Today, Reese’s doctor took a red pen to her list and eliminated everything. Every. Single. One.

Why? Because they trust her immune system and they want to give it a chance to do it’s job!! Her CD4s are strong and her B cells are reconstituted. Both of these are necessary for her body to protect itself. So this is the day I no longer need to fear fungal infections… Those itty bitty particles that float through the air, that you and I breathe all the time, the ones that pose such a threat to a transplant patient. I remember laying in bed at the Family House, imagining the day that I didn’t have to be afraid if someone opened a window, and a particle of mold drifted into a room, where my daughter wasn’t wearing a mask… This is the day, right now. October 14. Hallelujah!!

Reese will remain on a regiment of vitamins and of course, Hydrocortisone. As you know, she does not have adrenal function, and this will be the case for a long time.

IVIG

In addition to the elimination of medicine, the doctors also held Reese’s IVIG. This is passive immunity, parts of other people’s immune systems that are infused into Reese, helping to keep her healthy. This protective blanket has been incredibly helpful, but now it is just holding Reese’s own B cells back. (B cells that she now has, they are back!) This is very bittersweet… the sort of fake wellness that Reese has been experiencing has to go away, and Reese’s own cells need to build memory and fight diseases to build her own arsenal. There will be growing pains here. We are no strangers to precautions and germ safety. But we know that layers of protection (prophylactic antibiotics and IVIG) are going away in real time. I celebrate with a prayer that God continue to protect Reese as her own immune system shows us what it can do!

The doctor explained to me that Reese hasn’t felt right in a very long time. She has been on so much, for so long. I told her that in the next couple days, she will feel different. The side effects listed on all of these prophylactics (especially the anti fungal) are intense, and she goes through each day with these. What a joy for her to feel like Reese again!

*Six weeks completely off IVIG means that Reese can start getting IMMUNIZATIONS!! More on this if her IVIG hold is successful!!

The doctor ended with one additional prescription. Reese will replace all previous medication with a cookie. Yes, you read that right. Reese is growing taller (she grew again this month!! She’s up exactly 1 inch now!) But she is not gaining weight, this is lagging behind the doctor’s expectation. Reese is a great eater. My best, actually. She eats three big meals a day and snacks. But Reese loves fruits and vegetables, chicken and fish, healthy and yummy things that do NOT pack the big calories. And she has an incredible metabolism, like her sister, Quinn. So she has been prescribed some extra calories this month, in a push to give her more strength and energy. Her sisters are THRILLED.

Reese, just following doctor’s orders..

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8 thoughts on “10/14/19 Ripping the Band Aid Off”

  1. What a huge milestone—-
    This is such a wonderful step and I am so thrilled for Reese and Team Reese!! Go, Reese! The cookie order from the doctor makes me smile! ❤️❤️🍪🍪🍪🍪🍪

  2. Awesome news😍 will keep praying Reese keeps improving and getting stronger each day. She is such a great fighter.🦄💙🌈💙💪💙hugs to all, hope you can have her backyard fire and snores😊😉😊

  3. I read this to my 8 year old, who has been following the journey…. we were both so excited for Reese!! Such amazing news Jen!

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