ENT Visit

So the ENT we see here in Arkansas has proven to be much more aggressive than the one we had in Denver.  I am not sure if it is the fact Claire is older now, a different approach, or because he is a swallowing expert (somewhat self-proclaimed because there really is not a true speciality), but he has really taken to Claire's situation.  He has many ideas and plans on how to "fix" Claire's swallowing situation. 

I do agree he knows alot about swallowing disorders, etc.  He writes articles for journals, does research and reaches out to other doctors across the nation to discuss swallowing and the kids they see with these disorders.  Conditions like Claire's are rare so it is often necessary to talk with doctors at other institutions for similar cases, etc.

Claire's tonsillectomy and adenoid removal were considered a success.  It also appeared the dilation of the muscle at the top of the swallowing pathyway made a huge difference in her eating ability.  After recovery she seemed to eat more, eat more easily and be happier all around.  However, within weeks of her recovery, the congestion that dogged us all last fall/winter/spring returned.  This is congestion that just sits in her throat.  It makes her breathing loud and sound "sick" at all times.  However, it is not in her lungs and does not result in pneumonia.  It appears to be all in her throat.  Then about every 4-6 weeks or so it "backs up" into her sinuses causing a runny nose,etc.  This then progresses to a cough, sinus infection or without tubes an ear infection.  So yes, Claire has had her first ear infection of the season.  I so wish they had put the tubes back in (they failed in May) when they had her under anethesia in Sept.  Oh well, there are worse things than ear infections....

The ENT doctor feels that Claire has this congestion in her throat because the muscle above the swallowing pathway (esophagus) is contracting again.  This means it did not stay dilated after the surgery (T&A) as he had hoped.  He feels because of this her food, drink and secretions are pooling in her throat and have no where to go.  This is a very reasonable theory and actually he feels very likely.  So, in two weeks Claire will go back to the hospital for yet another round of anethesia where they will put a scope down her throat and see what the muscle is doing.  If it is contracted, he will dilate it again and then the hard decisions will come.  Claire will then undergo a swallow study approximately four weeks after this scope to see where we are there.  If all goes as planned I will be out of the hospital from my C-section and able to participate.  Should be interesting with a days old baby, but hopefully a mom, dad and nana can handle it all.  We shall see...  I will provide more information after the scope and as we know more.  The swallow study will not be until December.

Surgery will be necessary if they find this muscle is contracting and the "cause" of the problems.  This is a very delicate procedure and quite frankly the more I read the more nervous it makes me.  We will have alot to discuss should this be found to be the problem.  This surgery involves cutting into Claire's neck and cutting the muscle to keep it from contracting.  While stroke victims and others often have this procedure, it is relatively rare in children.  So, we will have decisions to make should that be the road that is followed.  However, the first step is to determine if this is even the reason for it all.  :)

As mentioned earlier then ENT doctor also discussed her allergy situation and started an antihistamine and nasal steroid.  Poor Claire, so many medicines!!!  I just want her to not have to be so sick with congestion all the time.  As she gets older it definitely bothers her more.  But she is a hard one to keep down!! 

Less than six weeks until we meet the new addition to our household!!  However, the focus here remains on Halloween and luckily the costume plans have not changed in a few days so maybe we are set.  The Candy Fairy is even prepared and ready to go. 
Thanks for keeping up with us!!