May Day is Pill Day

Pills
Zayne couldn’t take it anymore, so she switched to pills. It takes a while to get them down with applesauce, because there are so many meds, and some of the pills need to be cut up to smaller pieces. This is an historic day! She wanted to keep her old friend, Tacrolimus, as a liquid. Zayne asked the nurse 3 times if he was sure it was Tacro – the nurse removed the label, but had to find it to show it to Zayne.

Not all the pills p it takes a while to get these all down

PICC Line and Breakfast
I was informed by my nurse sister, Stacy, that I was writing Peripherally Inserted Central Catheter (PICC) incorrectly. Woe is me – I never saw the name in writing. I thought I was in on the lingo because I could say PICC.
Zayne was terrified when one of her PICC lines couldn’t be prepared for Plasmapherisis – she thought they would need to insert a new line. We did have to put on masks in our room to change the defective cap (it all worked fine).

Masked up for a change (she is a rebel and will not wear a mask outside the room)

Today, was pizza for breakfast. As usual, eyes bigger than her stomach, but she tried.

Because of yesterday’s pleural effusion, Zayne’s water intake was severely limited. It was a little ridiculous, because they were counting her IV meds as part of her intake, so she was only allowed 10 ounces of water all day. Her little parched throat wanted more, so when the nurse was away, a little sip from my water bottle sometimes slipped into her mouth. She couldn’t have any juice or protein shake, because she had reached her ridiculously low limit. It was exciting to learn that she gained a few ounces from the plasmapherisis. When the plasma was replaced, they put back less. Zayne’s happiness was quickly dashed when I poured out the allotted liquid gold and she said “that is all?”
By late afternoon, my guilt and worry about sneaking her a few sips (did I screw up her treatment?) was erased when they magically allocated 30 additional ounces of liquid.

Pizza breakfast and video chat
Note: We have a beautiful rooftop view

Question to Zayne from Nurse: Do you know what we are going to do?
Zayne: Yes, you are going to remove my plasma and take out the pesticides.

Visits
We had visitors! But, it isn’t the same since COVID came into our vocabulary. Two different therapy dogs, and watching a crazy, dancing Aunt Vanessa from the Cardiac ICU balcony. Zayne is not allowed to use sunscreen, so we covered her as best we could and restricted the time in the sun.

Health Update
For a changed, there is more positive news.
– Heart rate is slowly coming down. I just looked up and saw her sleeping heart rate at 116 beats per minute (it is the first time I have seen anything under 120s). The first night in ICU, I was looking at 130s bpm for sleeping. Awake time started at 150 bpm, and today I was looking at 130s bpm.
– Right side pleural effusion is diminishing
– The ECU seems to have worked because some number (total hemolytic complement [CH50] ) was low, and that is good. She does not need another ECU infusion this week
– Lost 1 pound since yesterday. Seems strange to be rooting for Zayne to loose weight, when we always want her to gain. She still wants to get her present from Grancie for reaching 60 pounds. I’m mean and told her rejection water weight does not count.
– First poop in 4 days
– Oxygen is no longer needed at night

Plan
Zayne will get IVIG, tonight, after the 4 hour Rabbit infusion is finished. She hasn’t had IVIG during rejection, so not sure how she will be in the morning. I love that docs listened to me and give her the nasty infusions while she sleeps – much better for everyone. This allows Zayne to get out of her bed and move around.

Zayne is going to start Lipitor, but not for high cholesterol. Adult transplant patients take Lipitor, and teenagers are not using it. Zayne is a little young, but studies show that it may be helpful. Innovative procedures are being used to get Zayne better.

There are treatment plans into next week, so I guess we will be in room 3203 at Children’s Hospital into next week. I have no clue when we will get out of the ICU, or when we can leave the hospital grounds. Our departure will depend on how quickly Zayne improves. At some point, we will probably go home with some of her lines in place, and come back to the hospital for out-patient infusions.
Poor Zayne asks me every day “when can we go home?”

Update from 12:30 am Rounds:
If Zayne continues to improve, we can probably move to the step-down unit early next week. It will be nice to not have a nurse (and everyone that walks by) watch me sleep.



Zayne is holding a 3-D image of her old, sick heart. I hope the heart in her chest doesn’t become another old, sick heart.

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