Boston - Day 3

Today was supposed to be an "off" day - no appointments.  However, the pulmonary doctor here wanted Peyton to be seen by their PT group regarding her "Smart Vest".  This is a vest that she wears which is hooked up to a machine.  It vibrates at a certain frequency for 10 minutes and then increases in intensity for another 10 and again for another 10.  It is to help break up any junk that is in her lungs so she can hopefully get rid of it.  The doctor wanted to make sure that the settings we are currently using are appropriate for her still.

Today we met with the PT and we found that the way we are currently doing things with her is actually very good.  We're definitely using the same frequencies that they would have recommended, so that is good.  She did, however, make some suggestions regarding the number of times per day and the length of each treatment.  We can try doing shorter treatments more often during the day.  We also have a "cough assist" machine which she said we should try to use more frequently as well.  In addition, she gave some suggestions for how we should be combining her breathing treatments with the smart vest treatments.  It was all very good information.

Today was a rainy day here, so we decided that Ron would drive us over and then he'd drive back to the hotel (1 block over), park, and come back.  Well, that didn't go as planned.  First of all, the garage at the hotel is VERY small and it is not limited to hotel guests.  There are no handicap spots and no elevator in the garage (it's only a few levels, but still) - it's not the best set up I've seen.  When the spots are full, they keep allowing cars in and they just park anywhere in the traffic lanes, starting at the top of the garage.  We were on the 2nd level and there was a car parked in the lane of traffic blocking us from getting out.  Fortunately the garage keeps the keys for these vehicles and they moved that one - it took a while though.  We pulled out of the garage and hung a right, but you immediately have to get one lane over and you have only a few car lengths before the light, which was red.  The right lane is a turning lane and we had to go straight.  Finally got into the appropriate lane and through the light only to come to a stop.  We then had to get back into a new right hand lane so we could hang a right into the drive leading up into the circle that is in front of the hospital for valet and drop offs/pick ups.  The line to get in was backed up that whole block and wasn't moving.  By this time, it was not raining and we could have walked after all, but now we were committed to the drive.  We left (we thought) in plenty of time but we didn't get to the front of the building until a few minutes past 10 (the appointment was at 10).  I went up to check in while Ron went back to the hotel with the car (the parking situation was worse when he returned).  We were called back into a room before Ron returned, so he wound up waiting in the waiting room for us and wasn't able to be in the room with us since the receptionists didn't know where we were taken.

Aside from all that, Peyton is running a low fever today and has had two big long naps.  Ron went out this afternoon to a nearby laundromat (note: "nearby" in Boston does not mean quick as noted above).  We packed enough for the kids for the 9 days we're gone and Ron and I knew we'd probably have to do some laundry for ourselves.  Peyton's latest round of diapers are the correct size, but the manufacturer either had a malfunction or they've reduced the size but are still labeling them as the same as they always were (these are the ones that medicaid allows for her - not a known name brand), so she's been leaking like crazy.  We've gone through almost all the pants we packed for her and we still have to get til Sunday!  Laundry was a necessity.  There isn't a coin operated facility here in the hotel, so Ron located a laundromat near the hotel over by Boston University.  We have clean clothes again!!  Woohoo!!

Last night Ron picked up food from a local "hidden jewel" (per one website) called The Squealing Pig.  They had a lot of pub fare.  I had awesome fish and chips.  We split a dessert - a Mars Bar Toastie.  It was 2 Belgian waffles with a melted Irish mars bar and bananas in between with strawberries and fresh cream on the side.  OH MY!!! It was SO delicious.  If you are ever in the area, I highly recommend it!!

No sight-seeing today.  We're all pretty tired and Peyton isn't herself today.  She cried and fussed the whole time we were with the PT today, so I knew she wasn't feeling well.

Tomorrow we see the sleep doctor about her bipap, so I will update about that tomorrow!

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:

http://fontenblog.blogspot.com/2012/08/eleven.html

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!