All dressed up and nowhere to go…
Day 20. Day 16 in PICU
Our dear friends Dana and Taylor had this awesome idea. Their church will be praying and fasting for Miss Tuesday, every tuesday until, well, until she is cancer free or they get really hungry. (sorry. That was tacky.) Actually, I don’t know how long they are doing this but, I do know that I am so honored that total strangers are gathering in our daughter’s name. Sacrificing so that she may receive health. Those of you who are not believers, get ready to have your socks knocked off. You will be witness to miracles.
For where two or three are gathered together in my name, there am I in the midst of them.
This is the word of the Lord. Amen and Praise God!
So we’ve been in the PICU since Friday (a full week). When we first checked in to the hospital on the oncology floor, we thought ‘what a depressing place.’ Now that we’ve been in the PICU for a week, the onc floor seems awesome. No one has hair, but the kids are all riding around on their IV poles and almost all of the parents want to talk about what they are going through. Down here in the ICU you see the flight for life team pushing stretchers down the hall, code blues and not that many smiles. You are, all at the same time fascinated by all the human drama going on around you, disgusted at yourself for being so nosy and unable to figure out which room currently needs the most prayers.
Tuesday has decided that she wants to hang onto all the fluids they’ve been pumping into her. She needs to release them so she won’t have so much pressure on her diaphragm and her diaphragm will push on her lungs. She was put on a ventilator on Monday am (after the longest night of my life). She has been a terrific fighter since she came into the hospital and even on the maximum dosages of three different narcotics would attempt to pull her breathing tube out. Everyone has commented on what a fighter she is and how great that is.
Jessica and I have been picking up lots of new medical terms and words, which we’ve been trying to use in our on-line games of scrabble, but we mostly end up spelling words like ‘he’ ‘they’ and ‘is.’
Here’s some fun facts I can tell you about Tuesday’s current vital signs:
Heart Rate: 137
CVP: 24 (but that’s not accurate and most of you don’t know what CVP is so it’s not really important)
SpO2: 96 This is important as Tuesday is a breath holder and likes to desat. This means she gets mad and holds her breath until the oxygen level in her blood is down to about 36%. This sets off lots of alarms.
BPM: 26 that’s how many Breaths Per Minute the ventilator is giving her
PEEP: 8 I don’t know what this is, but it was 9 and 8 is better than 9.
She has 8 pumps hooked up to her cute little self, but only 5 are running right now.
Children’s Hospital is a teaching hospital so her care team includes residents, fellows and attending doctors. Most of the docs will introduce themselves as just their first name, which I think portrays more confidence than the ones who introduce themselves as “Dr. Big Pants.” If the attending doctor can go by Emily, then so can the first year resident.
Okay, enough ramblings, after this one last thing. I’ve noticed, mostly among the fellows and residents, that there seems to be this unspoken contest of who has the most expensive eye glass frames. The more expensive they are, the less I want the wearer touching my daughter.
