Zayne woke up happy and feeling well. It seems that the IVIG treatment did not affect (did I use that correctly?) her morning. She had her morning pizza and had to take all of her pills. It seems that applesauce is the method of choice, but it still takes some time.
Today, we received 10 e-cards all at once. Zayne enjoyed reading all of them.
Zayne says it tastes like trash, and she can’t drink water for 5 minutes. This prevents yeast from growing in her mouth and stomach
PT Time
I thought it was time to get Zayne’s body moving, again. Since we lack an ICU playground, I made due with the designs on the floor: Walking on the tight rope, jumping over rivers (jumps are a little lacking right now), stepping on rocks (the black spots on the ladybug in the floor), and other things that I would make up. We did arm stretches, lunges, squats, twists, and other stretches – not too much, because her body is weak and tight. Arms can’t be lifted above head, leg can not lift up (no Taekwondo kicks), but it is a start. We did a few laps around the empty ICU, so I try to make it interesting (including sneaking into empty rooms to check out the different views).
When we came in for the hourly vitals, her blood pressure was way too high – back to bed to get blood pressure down. It seemed that every time we got up to do things, the blood pressure was too high. Apparently, the nurse realized that it may not have been much of an issue, because the systolic pressure was lower when Zayne is prone rather than standing. Hopefully, this isn’t a real issue.
Plan
Tonight will be another “Rabbit”, so a slow medical day. I notice that not much happens in the hospital over the weekend. After tonight, there are 2 more “Rabbit” infusions (ATG).
Test on Monday to check levels for Eculizumab. Since I can’t see the actual results, I don’t know the units, but she was 56 prior to treatment and 0.5 after treatment.
Plasmapherisis on Monday, Wednesday, and Friday
Echo is on Monday or Tuesday – this will measure flow rates and we’ll see if her ticker is showing more signs of improvement.
Zayne began taking Lipitor, which will continue to be a daily medicine for her. Usually, teenagers and adults take this med for heart transplants, but the doc wanted to give it a try on Zayne.
Signs that Zayne is getting better:
Venous oxygen is at 63.4% which is up from 49.8% when she arrived. It was 76.7 % a few days after transplant
X-ray result: Decreased right pleural effusion, now small. Yes, she has been getting a daily X-ray, but now that the effusion is smaller we will skip Sunday. No more lead shield protection for Zayne’s lower torso – latest research shows that rays are bouncing around, so better to let them escape.
No more private nurse – As of last night, Zayne has to share her nurse with a newborn baby. We’ll miss having a 3rd hand at Uno and Skipbo.