Thursday, November 14, 2013

Medical Update

Last week, we went to audiology and ENT.  We were following up on Abby's not-so-great hearing test from last March because our ENT wanted to make sure that her hearing really was getting worse before we put her under anesthesia for tubes again.  With the airway being such a huge concern, we really have to weigh pros and cons.  In March, her left ear was border-line and her right ear was showing moderate hearing loss.

Well, the decision this time was pretty quick and easy because Abby's hearing in her left ear was significantly worse and the right ear stayed equally as bad as it was in March.  So now that Abby's showing moderate hearing loss in both ears and we're noticing issues at home as well, our ENT said it really was time to do tubes again.  This will be set #3 in two years.  

He wants to get the tubes in soon because, as we know, the hearing issues also affect the speech.  However, we're waiting until after our upcoming pulmonology appointment at CHOP** to make sure she doesn't need anything else done at the same time.  We'll call to schedule the tube surgery right after we get back from CHOP.

**We are required to see a CHOP pulmonologist prior to scheduling Abby's Pulminary Functioning Test because they apparently think their doctors are better than Hopkins those are the rules.  I tried my darndest to get out of this appointment and offered a variety of letters from our pulmonologist, but they wouldn't hear of it.  So...we will be driving 4 hours, staying overnight, and driving back 4 hours for an appointment that will most likely be 10 minutes.  I'm going to just sit in the exam room for an hour to make it worth my while.

Meanwhile, I also asked our ENT (probably our favorite doctor, next to our pediatrician!) about his thoughts on Abby having a pulminary functioning test done under sedation at CHOP.  He asked a lot of questions and feels comfortable with our thoracic surgeon, knowing that we are part of The Center for Thoracic Insufficiency Syndrome.  That right there sounds pretty official and reassuring!  But he was concerned about the PFT lab (similar to where a sonogram would be done) and that trained medical professionals wouldn't be present.  It's usually just a lab tech and a nurse.

I'll semi-quote him:  "Well, if you were having it done here, IIIIIII would have the test done in the operating room with an anesthesiologist present who is trained in fiberoptic intubation.  But that's just me!"

So, yes, I will be speaking with the pulmonologist when we go in a few weeks to discuss this!  I whole-heartedly agree that Abby would be safest having this test done in a structured environment with everything set up and ready to go.  

I made sure I got our ENT's permission to give the CHOP pulm his name and contact information in case he has any questions.  I have a feeling he will be calling to discuss the pushy mom who is demanding an OR spot for a simple PFT test.  :)

Have I mentioned how much I love that our ENT is so protective of Abby's airway?!?!  He went to great lengths to try out every form of intubation under anesthesia before taking Abby's trach out so that he could keep her safe while finding out how/if she could be intubated.  We know exactly what kind of intubation she has to have.  

He is a genius.  

AND he's nice.  

I'll take genius over nice any day when we're talking about surgeons, but getting the total package is even better.  I just love him.  


Raelyn said...

My youngest brother, who has Down syndrome, needs tubes. He's gone through more that I can count, I'm afraid!! ;)

Erin said...

Gotta Love those hearing tests. I think I hold my breath every time we do one. Has the Dr mentioned the longer term tubes, I can't remember if that was what she had or not. May not be an option but they have held for a good long while for Mouse when the others lasted less than six months. Hopefully all she will need is Tubes in the grand scheme of things that is a quick and easy procedure.