Tuesday, March 9, 2010


This is not the post I wanted to write after our happy weekend, but yes we're back at TCH tonight again...back on 8th floor once again...
Jacob spiked a fever this morning, was coughing, had more secretions, and myoclonus seizures. Heart rate was up to 193, so our little kiddo was working really hard, and had a hard time keeping up his oxygen level despite the help of 3 liters of oxygen.
All signs that the day would be spent in the Special Care Clinic. His nurse and I packed up all his gear, formula and meds for the day as we were heading into the clinic.
It was pretty quickly decided that Jacob would stay. The sleep study showed that Jacob does need a BiPap to breathe better at night when he is not sick. Being sick, he sure needed the BiPap today as we all could hear his obstructive breathing.
So, we're waiting to find out if we will name this bug something or if we simply will call it a cold. Our rush order of a BiPap got stuck at our provider on Friday til today, since they don't deliver BiPaps to kids under age 7! We were all annoyed that they couldn't simply lift up the phone on Friday on a rush order, and let the sleep clinic know so they could have started working on us getting a BiPap from a provider who actually can deliver! Unfortunately that didn't happen until today, so we're probably hanging out at Children's until there is a BiPap in the house. Having said that though, Jacob is absolutely hospital sick. It would not be safe to have him at home right now. He's in the right place tonight.
Tomorrow afternoon, we have our conference with Dr. E and Dr. C. about a possible trache. I got the indication that BiPap might be enough for Jacob at this point, but we will be open to discuss all options, especially in light of how impacted his respiratory status gets each time he is getting some sort of infection.
I want to end this post with some words from Joakim's boss: "Jacob used to be just a very ill little boy; these days I feel he is more and more becoming a life teacher for all of us. Maybe that's his real mission down on planet earth?"
I thought that was beautiful as we're once again surrounded by medical equipment tonight.
Love, Maria.

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