Thursday, August 16, 2012

Boston - Day 4

We had our 5th appointment of the week today.  As with yesterday's appointment, this was not one that was booked before we arrived here in Boston.  The pulmonary doctor here at Children's Hospital Boston suggested that we see a doctor in their sleep center.  He is another pulmonary doctor specializing in sleep disorders.

Once again we found ourselves obtaining some very valuable information at this appointment.  I said to Ron it's funny how we came here primarily for orthopedics, but it's all the other appointments (planned and not planned) that we're getting the most useful information from!

The reason for this appointment was to discuss the use of Peyton's bipap at night since it seems to be an area of trouble lately.  We aren't having much success with her sleeping through the night with it on anymore.  If she does fall asleep with the mask on, more often than not, it's only for a couple hours and then we need to remove it because she's woken up in distress.  We were wondering if it is possible to put her on a sedative to help relax her.

We were with the doctor for a long time as he offered some suggestions.  Some were medication suggestions (in place of a couple she is currently using) and also the addition of a chin strap to her current bipap mask.  We should also be using humidity with her bipap (and even with her nasal canula if we are unable to get her to wear the mask).  Back in the beginning of her bipap wearing days about a year or so ago, someone had suggested not using the humidity.  Why, now, I'm not sure.  It's actually (I believe) in the original doctor's orders to do so.  

I will be touching base with the doctor back home again so that he can contact this doctor so they can discuss the suggestions that were made.

We have two more appointments tomorrow and that's it (that I know of).  We see neurology in the morning and genetics in the afternoon.  I We leave here Saturday, so I think that's about all we can squeeze in for the week.  It will be interesting to hear their take on things.

This has been a very tiring trip for all of us.  I would not ever describe this week away from home as a vacation.  Definitely not.  There is a reason why we don't take family vacations.  The last time we all went away together was in July 2010 for my mother's funeral.  It's just so difficult with Peyton.  First, there's SO much gear to bring for her and our own vehicle is not large enough anymore to carry all of it.  We're very blessed this week to be borrowing a friend's minivan so we could make this trip comfortably!  Second, it's taking Peyton out of her own environment and bringing her into a new one, risking introduction to different germs and so on.  She had a low fever yesterday and I have to say she's not herself today either.  Then there's the fact that while we are not at home, we have no nursing help, so it is extremely challenging.  We have had more than one person this week comment on how huge an undertaking caring for Peyton is.  I live it, so I think it's hard to see sometimes because it's just "life" for us.  But, yes, it is huge and we went into this week with me being exhausted from an IV medicine schedule that has me up several times during the night (this is still going on while we're away).

It's been nice to drive around seeing sites.  If you are friends with me on facebook, you may have seen the photos I've posted.  But nearly every picture is taken from a moving vehicle.  There's no real sight-seeing.  No meals out in a restaurant.  Ron's taken Moira out a couple times just to get her out of the hotel doing something different.  She's become fascinated by Lego for some reason, so he found a Target last night where he bought her a couple little sets so she could have something different to do.  But I would strongly hesitate to call this a "family vacation".  It is not.  I think if there is a need to pursue medical opinions out of town again, we'd have to weight our options very carefully before undertaking this again.  As for a family trip in the future??  I wouldn't be holding a room for us anytime soon.  It's a sad realization, really.  As we near the end of summer (school starts on Monday), I'm seeing all kinds of pictures and posts of everyone else's summer vacations near and far and it's sad to think that that wasn't the way life is intended for us to be as well.  To be honest, that's not the only sad realization we're taking away from this trip.

I will keep you updated on tomorrow's appointments, but if you don't come back here before the weekend, please keep us in prayer for safe travels home.  We leave Saturday morning - very early is the hope.  We will be making fewer detours on the return trip.  I think we're all anxious to be home in our own environment, even if it means returning to a home that was left in a state of chaos from all the pre-trip planning....even if it means returning only to move in a few weeks.  Yep.  We're moving.  Hadn't mentioned that here yet I don't think.  We aren't moving far, but a move is a move.

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