Thursday, May 23, 2013

Well Darling Ambrose is having a good Spring, yet keeping us on our toes as usual.  He has been having frequent sudden desats following position changes, that require bagging and xopenex (an inhaled bronchodilator like albuterol.)   Fortunately, they resolve quickly.   The sudden onset and postional nature makes them appear like obstruction (Ambrose has a history of this which resolved once the correct angled custom trach was created) but the fact that it is resolved by Xopenex sounds like bronchospasm.  To add another layer ontop of it, we have had the windows open and taken him outside alot during this period, which happens to be peak allergy season.  Could it be allergy related?
We are now trying a twice daily inhaled steroid called Flovent.  It will take a while before we see if it helps.  I have also been trying to keep the windows closed and keep Ambrose inside.  We have installed the AC since it has been muggy.

 Ambrose and the children of the Dummerston Congregational Church with the tree they planted.

Ambrose sound asleep, playing his switch activated bongos.  Sorry the video doesn't seem to work.

Ambrose's nurse helped him create this reversible masterpiece with his fingers and feet for Mother's Day.

Another video that doesn't want to play, but won't let me delete it.  It shows Ambrose in is stander playing other LOUD switch activated instruments and he is totally unimpressed.

Ambrose also lost his first molar.  It was not the loose one I've been watching for months, but a total surprise.  I saw it on the back of his tongue after having brushed his bottom teeth and flicked it out of his mouth before he was able to swallow it.  Yikes!  He has now lost 12 teeth.  Only 2 are unaccounted for and most have grown back.  Unfortunately the sharp spikey ones that cut his tongue came back the same way.  In fact, his tongue is crooked, with a deep groove in one side from these teeth carving into it.  A couple of years ago we had a dentist file the two front bottom teeth.  It was quite a scary ordeal for him and he wound up getting his lip cut as he was trying to get away from the drill.  It did stop the daily assault on his little tongue though.  Sometimes it's not easy being Brosie.  But the continuous hugs, kisses, and cuddles help.