June 25, Day 6, to 'Ambulate'

Lindsey continued to have an uneventful day. She took her 3 walks with 2-3 laps per walk.  Found out it is actually called 'ambulate'.  To take a walk is to 'ambulate'.  Still eating very poorly, only couple of bites per meal at best.  Today they are talking about putting in a feeding tube to help with some nutrient she so desperately needs.  The IV 'food' is ok for short term but not long term.  They may do that tonight and have it run during the night.  I don't have good memories of when Sierra had a 'hose-in-her-nose' (neither does Sierra).
Lindsey slept till 2:00 am then woke up with tummy pain.  She hasn't had a bowel movement (poop) for 4-5 days and they think that is what is causing it.  They have given her some stool softeners to help.  Anyway, I came over and slept with her from 2:30 on.  I don't know how anyone can sleep in those rooms.  There are beepers going off all the time, the IV's make funny noises, wires everywhere, the nurses are fiddling with her IV's, the other kid in the room was screaming about something, and somehow Lindsey slept through most of it. She woke up in a good mood and had her usual few bits of food for breakfast.
She 'ambulated' 4 laps today.  Gage, Sierra, and I would run ahead and hide from her. Playing hide-n-go-seek help make the walks fun.  We got her giggling pretty good a couple of times.
Ben and Angel Thorton came by. Ben was Sierra's heart buddy who received a heart the same day.  He has his biopsy today and is doing great. He was the tough guy who was on the Berlin Heart for 52 days. We sure love that family.
Today Sierra and Gage have heart appointments. Stacy will be taking them down in about a 1/2 hour.
Talked to Dr. Yeh about Lindsey's issues, mechanical support (Berlin Heart), the risks involved, and what Lindsey needs to do stay off of it.
Her lack of eating and tummy aches are a huge concern.   The more she doesn't eat the weaker her body will get, and harder the recovery will be post transplant.  That is why they are considering a feeding tube to run during the night.  Couple of items they are watching for, if she needs to go back on oxygen, or if she stops eating, or if she has more vomiting,  or she can't tolerate 'ambulating', then they will move towards mechanical support ie. Berlin Heart.  We all admitted she is flirting with all these situations.
The Berlin Heart has major pros and cons.  Most patient's health improves.  They eat more, go to the play room, gain weight. So why don't we do it?  About 30% of kids on the Berlin Heart have a stroke from blood clots formed in the device.  Also she would require blood transfusions, which will cause her anti-body levels to go up.  So even she would improve on the devise, the risks are huge.   Basically, the longer Lindsey can wait before going on mechanical support, the better.
Regarding her anti-bodies.  With her current low levels of anti-bodies, she could accept a wider range of heart organs.  She is not restricted based on her anti-body levels.  Apparently, that is not the case with a lot of kids.  If her levels were higher, then that would restrict the type of heart she could accept.  This test is new since Sierra's transplant, and of course I am way over simplying the doctor's explanation.
Still planning on going home tomorrow or Wednesday for a week or so. Just have to see....
Thank you for your continued sincere prayers for Lindsey, her weak body, her appetite, and her doctors.
Daddy