Parker has had a bit of a rough day today. He just threw up his last bolus feed all over Reed.
Parker’s crit is way down again. When you are low on red blood cells your heart has to work a lot harder. NOT good when you have pulmonary hypertension.
We will be admitting in back to PCMC tomorrow for more blood transfusions and some things to help his immune system. Reed and I are going to start donating blood to be reserved for Parker’s use. I’ll feel much better about all of these transfusions knowing that our guy is getting family blood.
I spent the day updating all of Parker’s medical information sheets. I typed him up a new sheet stating all of his meds, when they are given and what doses and in what concentrations he requires. Then I wrote up a new medical history for him. I included all of his issues plus the dates of all of his surgeries.
There is nothing that drives me more nuts than checking into the hospital and first having to give a history to the med student and then 15 minutes later to the resident and then 30 minutes later to the attending Hospitalist. It is much easier to just hand them Parker’s medical history and current meds needed and smile.
While I was at it I went ahead and updated Parker’s HUGE medical binder. I included all of his vent settings, his daily schedule and all his doctors telephone numbers. I also keep a calendar of appointments and therapies in this same notebook. I can’t stress the importance of being organized when you have a medically fragile child in your home.
This book could literally save Parker’s life in case of an emergency.
I’m way behind on emails and blog visits. I’ll catch up soon.
Please pray for this to be just an easy up and back trip. I’m worried about Parker’s emotional state and being admitted again. And please pray for this bug he has to be easily overcome. He’s been doing well these last couple of weeks. He’s been slowly gaining back his lost weight. He’s been looking so much better. We need to get him stronger!
I’ll leave you with a picture of our guy right after his bath. Gotta love that hair, eh?
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