Good things still happening amid the exhaustion! What a high we were all on on my last post. So many emotions and feelings. It’s so hard to describe. One day when we aren’t so tired I will be able to articulate it all better. But for now you can have the Cliff Notes version ????
•Ceara got moved to a step down unit last night/evening. This room came with a sleep couch for which Von and myself are thankful.
•All meds are now onboard. Immunosuppressants, steroids (which are already being tapered down!) , oral pain meds which are so much better at controlling her pain than the Morphine, Lasix, insulin to help regulate her blood sugars during this time of “shock” her body is in, and I could keep going but I can’t think clearly at the moment. She has 30 different meds!!
•Nitric acid has already been weaned from a level of 20 to a 2! That is a huge turn in getting her ready to do more walking. (((Since this draft 39 minutes ago she’s been bumped back up to 20. ICU life. I’m learning to be flexible and not sweat these hiccups. As one nurse smartly says, “healing is not linear.” But speaking of walking, she’s gotten 10 steps (at one time!) under her belt which is considered excellent progress. She enjoys spending time in the chair each day.
•Her bandage was taken off her incision sight. And next to the sight of her new heart pumping in her chest from the surgery video shared with us, it is the most beautiful thing we’ve seen.
•Her appetite is excellent and we are super thankful that she’s tolerated it all well and hasn’t had any bouts of vomiting and only slight amounts of nausea. That’s such a relief coming from a child who had Cyclic Vomiting Syndrome and is easily upset with car sickness, etc. That was one of my worries for her. She gets her fingers pricked hourly for insulin checks and those numbers have steadily declined and are now holding at a normal rate.
•Respiratory: steady slow improvement. The therapist on the team is pleased with her progress.
•Heart looks beautiful on ECHOs. She gets an echocardiogram done each morning at 8. Pacing wise she is doing well. They’ve done a couple trials taking her off. She does well at rest but it goes a little crazy when she moves from bed to chair or to bathroom. They assure us that’s completely normal. Again not getting upset over these hiccups is key. Dr. Wallis (chief of transplant) says we don’t need to worry unless he tells us to.
That’s all for now. It’s late. I’ll try to add some more thoughts in tomorrow. Bless you guys for going on this crazy roller coaster with us.
♥?Ashley