Zayne is feeling good and getting stronger. We did more ‘Mommy PT’ around the ICU, and she is able to do more and more. She was even able to hop like the bunny that is getting infused into her (she couldn’t jump at all 2 days ago). Zayne was amazed when I showed her the medicine name that shows up on the screen that is regulating her “Rabbit” infusion
We’ve walked round and round the ICU playing games to move different muscle groups. There are 9 rooms occupied out of 16. We are back to having a private nurse during the day and, now, at night; this is due to our neighbor moving out (Zayne doesn’t need a dedicated nurse). We’ll see if occupancy goes up on the weekdays. The dedicated nurse is nice for a 3rd hand at cards.
We spent some time, on the patio, listening to children playing. Zayne is asking me “Why did this happen to me?”, “Why can’t I be normal?”, “Why was I born with a bad heart?”, “I just want to be normal”, “When can I go home?”, and “I miss Scotty” [our cat].
Looking back on pictures, I can see that she didn’t smile at all when she didn’t feel well at the beginning of her ICU stay, but now she awakens with a smile on her face.
Zayne expressed worry that Monday’s tests will show that she is not getting better. The nurse assured her that she is certainly better, because he was watching us doing ‘Mommy PT’ and doing ICU laps.
Monday’s Plan
Echo in the morning will show if her heart is better. If the ejection fraction is increased, it will mean her heart is improving. We have a good indication that it is improving because her liver is no longer in the middle of her abdomen (it was pushed there by a backup of blood from her heart not doing its job).
Another Plasmapherisis where her plasma is removed along with the bad antibodies.
A CH50 test to see if she needs another Eculizumab treatment. What is CH50? Well since you asked, one CH50 unit is defined as the volume or dilution of serum that lyses 50% of erythrocytes in the reaction mixture. I hope that clears it up. I told Zayne to think of the Eculizumab treatment as a shield from the antibody attackers. Apparently, something is being stopped from punching a hole in something; if the hole can’t be punched through, then we are good.
I think Monday night may be the last ATG (Rabbit) treatment for the initial round. Rabbit treatment reduces T-cells. I tell Zayne that the T-cells are white blood cell soldiers that try to attack her heart with their swords. Other white blood cell soldiers, the neutrophil brigade, are still there to fight off bacteria.
Most likely, Zayne’s dose of milrinone will be reduced. When she is off milrinone, then she is eligible to be moved to the Cardiac Care Unit (CCU)!
Ha: You are both rule breakers! (you with your water, her with her marker) I like to know the rules, so I can be intentional about the ones I break. I am glad Z’s smiles (and energy) are on the come back!!