So Thankful...

Psalm 69:30 (English Standard Version)

I will praise the name of God with a song;

I will magnify him with thanksgiving.

Our hearts are filled with Thanksgiving.  We are back home!  The procedure went  extremely well and we were allowed to leave the hospital (this does not happen very often - Mayo usually likes to keep us as long as possible).

(sorry the picture is not the greatest quality - the hospital gave it to him as a gift)

AJ's airway looked very good.  The largynamalacia is back (floppy larynx) but it is not serious enough to treat at this point.  If or when it becomes a problem he is a great candidate for another airway revision - he has already had one done and his doctor believed it would work again if necessary - great news - any way to avoid a tracheostomy I'll take.  

The interventional radiology doctor was so very pleased with AJ's dilatation.  He said AJ's esophagus went from having two hour glass like blockages to a nice open area.  He really enjoyed working with AJ and asked that we specifically request that he be involved in any future interventions.  Three of the physicians present had worked with AJ before.  It's so great to have a team that loves to work with AJ.

AJ did so great.  I have to credit the peace of God in his little life.  He went back to the operating room without a tear.  He laid down on the table while they prepped him, he let them place the mask on his face and went to sleep holding my hands.  Even his IV access was great.  It has been terrible in the past but they got it in without any difficulty.

AJ's most painful part was the intubation.  His mouth is filled with blood blisters from the damage.  While in the recovery room he asked me to take a needle and start breaking them.  Putting a needle in his mouth is not the highlight of my day but it brings him real quick relief.  He is not allowed anything to drink or eat until tomorrow and he is not very happy about that.  He is asking for McDonalds - probably because we told him they would fix his throat and that he would be able to eat a french fry - something he has never been able to do.

The procedure did bring out the need for additional OT services to keep his mouth nice and open.  It opens substantially less than it used to.  This will become a problem in the future as the smaller the opening; the harder it is to intubate him for any procedure.  The doctor felt he had strictures holding it closed.  I had noticed that to get a toothbrush in his mouth is difficult as he opens just wide enough to get a really small brush between his teeth.  

Thank you for all your prayers.  We are indeed blessed.

Barbara