Doctor's Report

It was quite a frustrating day yesterday but we felt better before we left Josiah last night.  We were able to speak with his doctor and she gave us the full report.  Yesterday morning at rounds the surgeon suggested that maybe Josiah was too dry so they stopped his lasix (diuretic) and gave him more blood to optimize his haemoglobin and they increased his other heart medication.  The plan was to try to stop the episodes medically (as opposed to surgically) and thus we would be able to hold off on surgery as long as possible.  During the meeting in which Josiah was discussed, all of the doctors felt that trying to do the Glenn procedure now would be too risky.  The decision was to do the BT Shunt and correct the vein issue (with the Coles procedure) when Josiah needs surgery.  Over the weekend they would try to stop the episodes and then extubate him after at least 24 hours without an episode. 

Josiah had a great morning yesterday but he ended up having two episodes in the afternoon.  There was a little less drama as there wasn't a whole team surrounding his bed but the nurse had to sedate him and keep bagging him (i.e. manually help him breath) for a long time until his saturation levels came up.  Both of these times it seemed that he would be upset about something (diaper change, heel pricks, suctioning, etc.) and then he wouldn't be able to get out of it himself.

I just spoke with the nurse from last night and she said he had another episode overnight.  This time he was fully asleep and his saturation levels just plummeted.  It took them 20 minutes to get him out of it and they needed to give him a muscle relaxant.  The nurse thought that extubation wouldn't even be an option now that that happened.  If he can't be extubated, the staff physician will go into the huddle Monday morning and just say that he's tube dependent and that will force the hand of the surgeons and his surgery will be scheduled (next week or the week after).  They don't want him on the tube too long, and as of today, it will be a week of continuously being on the tube.

The nurse was explaining that just by being in the CCCU he has a much greater risk of infection because he's on the tube and he has central lines, etc.  As the doctor said yesterday, "bugs love plastic".    

Thanks so much for your prayers.  We really appreciate all the emails we've received - they mean a lot.

Blessings,

Elizabeth and Graham