Back Home

We are back home from the hospital (sooner than expected) as AJ did not have the procedure.  It got really complicated and the doctors on his team felt they were not prepared to safely treat him.  I am so thankful when this happens as I don't want anyone doing anything to his little body without having the confidence that they have adequately prepared.  It's not our first time that we have been sent home for this reason - but this time we don't have a four hour drive back to our house.This is another reason why we moved to be closer to his medical providers and it was another day that I could rejoice.

I'll try to explain the complications (for those of you dealing with EB, you already know most of this).  We realized that AJ needs to be intubated (a tube down his airway) in order to have the procedure.  His strictures are in his upper esophagus and they need to put barium into his throat in order for the radiologist to see and open his esophagus. Since he will be under anesthesia he will not be able to swallow the barium, instead they will have to put in in via a large syringe.  This is very close to his airway and there is a large risk that he will aspirate the barium into his lungs unless he is intubated.  His airway will be protected if he is intubated - a pretty big deal.

Problem with AJ is that he has tracheomalacia (floppy upper airway) and last time he was intubated he could not be successfully extubated (tube taken out).  He airway swelled, he could not breath on his own and he spent a few days on a ventilator; coming very close having a tracheostomy (a permanent airway opened in his trachea).  Intubating a person with EB has a lot of risks even without trachamalygia.

The GI doctor tried to reach his airway doctor to discuss starting steroids and to see if the procedure could even be attempted today.  Then we learned his airway doctor is out of the country.  That was the final answer.  We were not going to do a (somewhat elective) procedure without everyone on the team available.  In another twist, they decided that they would also replace his G-J tube while he was under for this procedure.  I understood their reasoning but they do not carry AJ's size tube and if it was replaced, we would have to return in two weeks, to go under anesthesia to have it replaced again.

One thing we discussed was planning to do the procedure and add to the list of things we want to accomplish.  We would really like to look at his vocal cords and upper airway while under anesthesia.  In the  past he has had serious airway issues and we would like to have a good look to see if his airway is any further compromised.  We would also like to know if his vocal cords are showing any additional signs of fusion.  When we were in the otolaryngology (ear, nose, throat) office they put a scope down and were able to get a partial look.   His last appointment showed some fusion and we would like to have a more accurate picture - perfect time while under anesthesia.

Lots of problems; Lots of reasons to wait; Lots of things to be thankful for.  Aj was very happy to say goodbye and he is home, happily sleeping in his bed.

Thanks for your prayers, it's sweet to see how they were answered.

Barbara