Tuesday, March 29, 2011

roadblock after roadblock

I'm missing just being a mom.  I spend so much time on the phone or emailing or faxing or organizing papers or dealing with insurance companies or whatnot.  Since our travel dates for atlanta were confirmed I have spent every single day from 8am to 5pm dealing with issues, and afterwards I'm still working on my paperwork and trying to figure out what next and which way to go the next day.  I haven't spent any time on the floor just getting to play with my little man. 
I just want to be a mom.  But it's not possible.  Eli NEEDS these things.  They are required for his health and well-being.  I don't know how to balance it all.  How to get some things to simply run on auto-pilot.  I don't know when it gets easier, heck I don't know IF it gets easier anymore.

Flying to Atlanta has been one of the biggest obstacles.  We can't find an infant O2 airline approved concentrator for any less than $800 PLUS.  So it looks like we are going to have to cancel our plane tickets and drive to Atlanta.  Eli isn't stable enough to make the flight without O2.   This will mean a 17hr drive with a medically complex baby.  YIKES.  We will have to break it into 2 days, which means finding hotels along the way.  And then we will have to do it on the way home as well.  We aren't holding our breathe that Eli will be able to handle 17hrs of driving either. 

Eli's gagging has also gotten considerably worse.  He isn't handling any of his meds right now, G or J.  The moment you start putting them in he starts gagging, his eyes completely dialate, and he turns so many lovely colors.  Calls into the GI again.  They are hoping to get the PH probe done sooner, but with us leaving for Atlanta this may not be possible. 

More updates soon.


Jess said...

Praying, praying, praying...if you need any help from the hospital we are located on 6H so I can find and yell at whomever you would like :o)

Praying it works out for you to fly...praying you get answers and more help!!!

Jancy said...

Prayers going up! ((HUGS))

The Wagner Three said...

Heather I'm so sorry. The O2 thing sucks, and I totally do not get why that is so hard?! It doesn't seem like something that should be that hard or impossible. I'm frustrated for you and wish there was a magical answer. It is true that Eli needs all this, he needs to get to Atlanta, he needs the tests. But he needs you too, and even just a few minutes in between things are probably making his day. He knows you are there and loving him and taking care of him. ((HUGS)) to you all.