Where to begin? I did not get an update written yet about last week's hospital stay, and here we are again!

Tobias was admitted Wednesday the 26th after a pattern of increasing desaturations (low oxygen level in his blood) culminating in several prolonged episodes during the night on Tuesday. A sleep study and a variety of other tests were performed during his stay without any significant findings. His sat level remained frustratingly good so that we are still ignorant of what caused the problems. We were able to consult with GI doctors about his reflux problems and they suggested a couple changes with his meds. A test or two which might be useful were not able to be done because of the holiday weekend but should occur at some future date. His breathing rate had been high for about a month and remained so at discharge- with the hope that some of the changes made would lead to improvement over time.

We arrived home Saturday evening in time for a Thanksgiving celebration. Sunday was spent trying to find a new schedule which would accommodate the changes in breathing treatments and meds. It seems like a giant puzzle sometimes: so many hours apart for these, that one on an empty stomach, this one with food . . .

Early Monday morning, Tobias began spitting up mucous, small amounts but quite frequently. I suspected his new GI medicine (reglan) was to blame and put a call in to his pulmonologist. It progressed throughout the morning from clear to green to brown plus Toby began to look and act sick. We went to have his electrolytes tested and to his pediatrician that afternoon. By this time, he was also having loose stools and beginning to dehydrate. So the pediatrician and pulmonologist agreed to a transport by ambulance from the doctor's office back to Mott's in Ann Arbor.

After 4 hours in the ER playing pincushion and other fun games (some old, some new), we landed right back in the room we were in last week. Home, at last?!

Toby quickly improved on the iv. But we are thankful to have the same doctor on call again as we did during his stay in October and last week. (Dr. Toby- a doctor with a very good name). During the night, the extra fluid caused some problems with his breathing which she was able to speedily diagnose and treat appropriately. His treatments are often a balancing act between problems on either side.

It is not sure whether his problems are from the change in meds or just a good old-fashioned virus. (One of his sisters went down sick today, also.) We are waiting now for him to be able to tolerate normal feeds again and then we can head home. Maybe tomorrow. So far, he has kept down a little pedialyte.

Meanwhile, this afternoon he will get one of the tests we weren't able to do last week. (Saves a trip another day!)

How about a summary so we don't get lost in the details?

Toby is ill now but has been doing well. He has been gaining weight and growing at a good rate. Even sick, he now weighs over 11 pounds. He is having problems with reflux and breathing which should be dealt with over time but which are not critical. More consultations and tests may be in the future.
He made it 8 1/2 months without getting ill. We have a lot to be thankful for in this Thanksgiving season.