Notes from room 3203 at Children’s Hospital Colorado in Aurora on April 30, 2020: Zayne work up feeling sick from the AGT (“Rabbit”) and the Eculizumab (let’s just call this one ECU because I can’t say it) treatments.
I requested that Zayne receive the treatments at night so she can sleep through them instead of suffering. After a few hours of not feeling so good, she was able to spend the rest of the day in relative comfort – if you don’t include heart hurting, fingers tingling and hand tremors (probably due to a brief calcium deficiency), the constant discomfort of the PIC and IV lines, arm hurting from the failed IV attempt, headache, stomach ache, and being forced to do a lot of things that she doesn’t want to do.
Her Milrinone (vasodilator) was doubled, and this increased her ejection fraction from 25 to 40. For some reason, the fluid increased around her right lung. So, liquid intake is being restricted – Zayne was not happy about this new development. And Zayne has been ordered to walk around more and get out of bed. She was able to go outside on a balcony, and we played cards with her nurse for a while (the ER is not crowded). It is good for Zayne to just sit in a chair. Today was her “happiest” day in the ICU. She received gifts that brought her joy, got to go outside, and had a nice surprise when she had a video call with Aunt Vanessa and realized she was in our house.
Zayne ran out of steam before she completed her required walks. I still took her on her walks, but she was tired and not happy.
Oral medicine time takes place at least 2x/day is getting to be very difficult. Zayne is taking A LOT of medicine and the taste of most is disgusting – apparently grape Tylenol is horrid. Some of the meds are really repulsive, and not just because she doesn’t like the flavor. There may be a silver lining since she is agreeing to try pills. We’ve practiced swallowing mini-M&Ms at home, and she has swallowed really small steroid pills in the past. Today, for the first time, she swallowed a Tylenol pill (cut in half) with applesauce. At tonight’s rounds, I requested all meds be in pill form that can be cut to a size no larger than 1/2 a Tylenol. Some meds like have to be in liquid form. For example, Nystatin, must be swished in the mouth and swallowed to prevent thrush.
Friday’s schedule has an early morning plasmapherisis, followed by “Rabbit” (AGT) and intravenous immunoglobin (IVIG) therapy. IVIG is a processed form of immunoglobulin that is made from blood plasma, and contains helpful antibodies that are added to the bloodstream. I believe AGT and IVIG will be done at night when Zayne is asleep. This means that we may be able to walk around, sit up, and not feel too badly (I hope) after plasmapherisis.
Wow, EF from 25 to 40 in one “jump”. Hugs for your trooper!