Tuesday, August 14, 2012

Boston - Day 2

Today was the day to see the Pulmonologist here at Children's Hospital Boston.  This was an appointment that was more of a "just because we're here" sort of thing.  However, the appointment turned out to be really beneficial.  In fact, I think it may actually prove to be more helpful to Peyton than the Orthopedic appointment in the long run!

The Pulmonary doctor was very nice.  We spent a LONG time with him.  Lots of history to go over.  In a nutshell, he said that he would love to try to see her back at her baseline before all the illnesses - she may have the potential to get back to there if we can recreate how things were before all the illnesses.  He said a trach is an option he would not take off the table entirely, but would not do right now.  Remember, though, that this is something that we have long been opposed to for many reasons.  He said the benefits would be mainly for airway clearance and that it would not entirely remove the possibility of aspiration.  He had some suggestions as far as medications.  The doctor also said that with everything going on right now, he would definitely recommend a bronchoscopy.  He recommended a chest CT scan.  She has not ever had one before, but he said that she would have to be in her "best" health once she gets past this illness just so we could have the best understanding of what's going on.

As a side note, in a previous post, I mentioned that Peyton's Cardiologist back in Charleston wanted to do a heart cath if there was ever a time coming up where Peyton would be having another procedure under sedation.  It wasn't something he'd just jump into in and of itself.  So, if Peyton does wind up having a bronchoscopy, she will likely also be having a heart cath.  Also note that none of these is being done in Boston.  The bronch was a recommendation for her doctor at MUSC.

We are being set up with a therapist tomorrow morning so we can go over her Smart Vest - she will take a look at how she tolerates the current settings and possibly look at how the settings can be increased (if at all).  They are trying to get us in with their Motility group while we are here.  We also have an appointment at a satellite office in Waltham, MA with a sleep doctor.  This is so Peyton's sleep study can be reviewed and we can make sure everything with her bipap is set up as it should be and that her mask is a proper fit/type.

The Pulmonary doctor today was extremely helpful and he is happy to discuss the matters we discussed today with her doctor back in Charleston.  I've already been in touch with them and have passed along the doctor's information so they can get together and discuss everything in far more detail than I could ever do.

This afternoon, we took a side trip to Salem, MA.  We went to the Witch Museum which Moira described as being "horrible...for a museum."  Sigh.  She would rather have gone to the Ansel Adams exhibit at the Peabody Museum across the street.  She's 8.

Today is also the 11th anniversary of the loss of our son.  I blogged about that:

We typically order in a nice dinner and have a cake in his honor.  It's a little different this year since we're not at home.  Ron's off on a walk to grab a nice dinner for us and we will be trying that restaurant's specialty dessert - a Mars Bar Toastie - Irish mars bar, belgian waffles, bananas, fresh cream and strawberries.  Oh. My.  I will have to take pictures.

I will keep you updated as the week goes on!

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