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.