December 12, 2010

Just a Spoonful of Sugar


helps the barium go down.

No.  I tried it.  It didn't.

Mix barium in any single thing and Bridger has proven that it will come right back up again.

Bridger had to have a swallow study a week or so ago to further pinpoint the cause of his aspirating and frequent pneumonias.   gag. vomit. gag gag.  vomit.  That is about summarizes the study.  This is just the latest test in our smorgasbord of medical delights he has been through.

Driving home I was counting the number of hours we will be in doctors appointments this month.  I stopped counting when I got to over 100.  On top of that there will be the 50 hours of administrative work that will result from those appointments.  Since I hit too many red lights on the way home, I also decided to mentally list Bridger's team of specialists:

Pediatrician
Ophthalmologist
Neurologist
Ophthal-neurologist
Gastrointerologist
Pulmonologist
Geneticist
Doctor of  Physical Medicine
Doctor of Developmental Pediatrics
Nutritionist
Physical Therapist
Occupational Therapist
Speech Therapist
Vision Therapist
Feeding Therapist

Those are just the ones we are regulars of.  There are many other "first dates" Bridger has had with others.  The unfortunate development in this journey is that I have become a self-labeled "doctor snob".  With the amazing high quality pool of specialists we have in this area, I only go to the best.  If they aren't the best in their field, it isn't worth my time.  Very snobby of me, but I love our team and am so grateful to the skilled and talented medical professionals that watch over Bridger's health needs and concerns.

On some medically fun news. . . Bridger just got his medical bed this week!  Many hours of sleep have been lost between myself and Alan as Bridger often wakes up during the night, and once his brain is in the "on" position, it is hard to convince it to turn off again -- so we log many hours in his race car bed with him.  If we don't go in there, then he will make grunting noises the rest of the night as he exaggerates exertion sound effects as he is pulling himself up on the sides of the bed to get out.  Several times he has been successful at flipping himself out of the bed with not the most graceful and safe of landings.  So now we have ourselves a monstrosity of a contraption that takes up a good majority of the room and there is just no way to decorate around this thing to help it blend into the space and appear more subtle.  I LOVE it!!!  And so does Bridger -- and everyone else!

We ordered the full size so when we have to sleep in there with him we are still able to walk the next day.  It is fully articulating so Bridger can sleep elevated to minimize his aspirations due to his reflux.  It has high, fold-down sides with clear windows to play peek-a-boo with.  The mattress height lowers and raises to full chest height so the strain of lifting is minimized.  The icing on the cake is the iv pole for tube feeds.


It is a bed fit for a king but a wonderful place for our little prince.  I found that I can trap all the kids in by raising the sides and lowering the mattress far enough.  Hmmm, maybe that part from "'Twas the Night Before Christmas" about ma and pa in 'kerchiefs and caps settling down for a long winters nap. . . I think I just might have a way to make that happen now thanks to this.  Yes, this will not only be a special needs bed -- but a family sized play pen.