Wednesday, July 6, 2011

Medical Update

We are up to 15 minutes off of the vent 4x a day, and Abby's doing SO well!  She is really enjoying being off, and so are we!  We can now carry her upstairs separately from the vent, which is SO much easier!  We've even started loading the vent in the car and just carrying her out afterwards.  (We hook her right back up, but it's a huge improvement from trying to coordinate carrying the vent and the carrier.) 

I have also recently started feeding her while she is off, which has proven a challenge for Abby.  She can do it, but she has to work hard at figuring out how to alternate breathing and swallowing.  It's certainly something I take for granted, but it's kind of neat to see how she is working it all out in her head.  I feed her much slower when she is off, but she is doing it!

We haven't tried bath time off the vent yet.  I had planned to do it the other day, but we got home later than expected, so I just bathed her downstairs.  It isn't something I want to try by myself, just in case something happens, and Matt's not always home in the evenings.  I think he'll be home Thursday night, so I might try then.  Pictures to follow!!

The pulminology team said that we would have known pretty quickly if she couldn't handle being off, so they are very encouraged by her response to the change.  Abby also really dislikes being put back on the vent, which the pulm team said was a very good sign.  At the end of this week, they will be turning her rate down to 10 breaths per minute.  (We're on that alternating week schedule where either the breath rate or the time off the vent changes, but something changes every week).  We'll go back to pulminology in two weeks, where they will reevaluate her and possibly start making the changes more rapidly.  We don't want to set her up for failure, so slow and steady wins the race!

Abby's cranial shaping helmet was ordered last week and she will get it this coming Monday.  I'm still not thrilled about the idea from the aspect of it being one more thing the poor girl has to endure.  However, I know it is necessary and will great in the long run.  Three months isn't really that long in the grand scheme of long as it works!  I'll be super bummed if we put Abby through this and the darn thing doesn't work anyway.  She'll be wearing it 23 hours a day, with just an hour off for a bath and trach care.  I'm apologizing to her already! (In truth, it is probably a much bigger deal to me than it is to her!) 

Her helmet will be pink, in case you are dying to know!  They didn't have purple, and some of the other colors and prints were a bit wild for my tastes.  We can decorate it, so I plan to make it pretty...I wonder if I can get Vera Bradley to do a custom paint job for me?!  And yes, my sister and I have already been scheming on how we can clip a bow to it.  Stay tuned!

Once Abby gets her helmet, we will be taking bi-weekly trips to Columbia to get her head measured and her progress tracked.  It's about the same distance there as to Baltimore, but it's not really an option to try to book another appointment on the same day with these.  Oh well!  The break in appointments was really nice while it lasted!

Next week, we will go to feeding therapy.  Hopefully, the specialist will increase the amount Abby can take by mouth when she sees how well she's doing!  I plan to get video of Abby eating and sucking to take with me, just in case she doesn't cooperate at the office.  I've tried a few other times to get video, but Abby gets a little camera shy. I need to do it when someone else is here to hold the camera.

Sooooo, the appointment schedule for the next few weeks:  cranial appointment on the 11th, feeding therapy on the 13th, and pulminology on the 20th.  After that, I don't have anything scheduled until mid August...but that will change soon when we begin the cranial appointments and pulminology schedules her next one!  (They want to see her often right now while we are weaning.) makes me tired just thinking about all the driving I'll be doing!  Coke will be my best friend.  :)

1 comment:

kbowman6 said...

Julie, I have a friend who's son had a cranial shaping helmet. I don't remember how long he wore it, but it made a remarkable difference. They live in Columbia, so my guess is that they went through the same offices as you. Here's hoping that Abby's helmet is just as successful as his was. Let me know if you would like to speak with them, and I can pass along her contact info.