Last week was stressful, as I’ve written. The diagnosis of FPIES has been tough to bear so far, just in the fact that there are no easy solutions to this problem. The more I read – the more I learn – the more scared I get about what we may … Continue reading
This morning Dr. G called back. He basically agreed that Mr. Charm might possibly have a milder form of FPIES, and he thought our idea of a self-made elimination diet wasn’t bad. He said most doctors won’t suggest elimination diets unless they’re absolutely necessary because most people don’t want to do … Continue reading
Today we had a follow-up appointment with the allergist. I was nervous, because I’d done as much reading as I possibly could in the previous 24 hours, and it appears to be quite common, at least, from the moms who report their experience on message board support groups for FPIES, … Continue reading
The hospital gave us 2 cans of Neocate and the remaining pre-mixed formula they had ready for Mr. Happy when we left the hospital. This only provided, by my estimation, enough food for Mr. Happy to last until Monday or Tuesday of the following week. Not a lot of time … Continue reading
We woke up, made and ate breakfast, started tidying up the house, and then the Geek’s bosses wife called us. Since we weren’t in the hospital any more, she wanted to go ahead with her plan to visit her sister in Little Rock and was wondering when we were planning … Continue reading
Tuesday I woke up to another set of doctor’s rounds with the gaggle of interns. Out of the blue, they informed me that if Mr. Happy ate well this morning, as expected, he would be released that afternoon. Say what? I was dumbfounded! Of course I wanted him to come home, … Continue reading
I woke up in the morning to discover that sometime in the night, Mr. Happy had decided that he no longer needed to be on oxygen. He had pulled the canula out of his nose and it was over his head like a headband. The nurse saw this while I … Continue reading
For some reason, I woke at 6:15 a.m. and couldn’t go back to sleep. So I got up, pumped and dumped, cleaned the pump equipment and was heading into the shower at 7:15 a.m. when Mom called me. She immediately asked me if I was awake, as sometimes when she … Continue reading
We woke up to find Mr. Happy sleeping on a wedge pillow. Apparently sometime during the night the nurses and doctor decided to elevate him to perhaps help his breathing. We talked with the dayshift crew and find out the plan for the day. They decided they wanted to rule out anything … Continue reading
We were taken straight to the Intermediate Care Ward, which is the middle ground area between the regular ITU (Infant/Toddler Unit) and the PICU (Pediatric ICU). The nurses, doctors and therapists were immediately tending to Mr. Happy, but one nurse took the time to provide us with pillows and blankets, … Continue reading
