Today had significant milestones to poop on Mommy. The swan catheter measure her pulmonary pressure. It was strange to look at the yellow tube that was pulled from her neck and realize that just seconds ago it was in her
right atrium, right ventricle, and pulmonary aorta. Next accessories to be pulled were the chest drain and electric leads (also on her heart). A little morphine was needed to help this procedure which included a small stitch at the drain site.
No more bedpan. Zayne insisted on going to the potty. She walked for the first time with her new heart on very shaky legs. It took 2 people to help her walk – I helped her walk but made sure I wouldn’t lift her from under her arms if she fell. The nurse pushed the huge med poles that are tethered to Zayne via tubes and wires.
Wiping out the immune system is an itch (and a word that rhymes). Last night Zayne had a medicine which made her pretty sick. Today, a 6 hour dose of a different medication to continue the 4 day process. Her poor little body is being brutalized by these drugs. She feels awful and is lethargic. Once her immune system is gone there will be 3 months of tweaking medications to find just the right dosage that will keep her new graft (heart) from getting rejected, but leave her with a little bit of an immune system.
After having more drugs to help counter-act ill effects, Zayne went for her first walk down the hall. She was pretty shaky, but managed to go a short distance. I know she isn’t feeling well because she had no interest in picking out a toy from the ‘treasure box’, and wasn’t interested in playing on the iPad.
Grancie helping Zayne walk down hall
After a nice nap and a little Pediasure, it was time to take oral meds as some of the IV meds are switching to oral. I had asked for help with getting Zayne to take her meds, and a child life services specialist brought me a reward page and stickers. I have no idea how to use choices and rewards when the kid doesn’t respond except to shake head ‘no’ and squeeze lips shut. One of the meds must be taken at an exact time, and the nurse ended up forcing the meds into her mouth. The PTSD begins.
Payback begins too. I was comforting her when she claimed her stomach hurt. I told her that was because she was crying, but quickly realized she had a new heart so that shouldn’t be the reason. Then I smelled something weird and realized my hands and stomach were wet. Sick medicine poop. Her stomach stopped hurting and she didn’t even know what had happened. She is out of it for now. Hopefully, she will be lucid in the morning and we can try walking again before she is hit with another 4 hr does at noon followed by the 8 pm dose. Thursday is not going to be a fun day. The final dose will be on Friday.
I’m all for getting pooped on if it makes her feel better. Medically, she is doing amazing and that little heart is beating strongly.
Here’s the incision.
