She is still on the vent. She is still heavily sedated and very difficult to keep sedated.
Not much really happened today except that she failed her two-hour CPAP trial. She made it an 1 hour 40 minutes before they stopped it because she was struggling to breathe. She has been passing her 1-hour CPAP trials without any problem, but now we know where our area of weakness starts – whether it is due to the sedation or due to her throat weakness or combination is the question. So the doctors decided to help her exercise her lungs more by bringing down the pressure settings on her vent requiring her to put more effort into breathing, which they did. She has done fine so far in the 6 or so hours since that change has been made.
Aetna turned us down for the medi-flight to Vegas. No surprised really. The hospital is going to appeal this decision, but after what I have researched, it will be very shocking if we go through with it.
The more I think about it, the more I think we would like to have Dr. Roy do the surgery here in Texas, and that would require Hannah remaining in the TCH PICU for 7 or so days to recover from surgery. The PICU team here in Texas already knows her. Then, we think that the additional recovery time needed in the intermediate care plus regular room recovery could be done in Las Vegas.
Regardless, we have to fly Hannah to Las Vegas via a medi-ambulance of some sort. Even if we spent the full month here, she will not be allowed to fly with a fresh trach, and there is no way in hell we can drive cross country with her (the doctors won’t even give that one a consideration). The doctors say they think the flight is around $10,000, but my dad called me tonight to tell me he looked it up and it is around $25,000 or so because flights require a nurse and a paramedic.
We need to find a way to fly her (and me) to Las Vegas regardless of what we do. How the hell this is going to work out, I have no idea.
My head hurts… I just want this over and bring her home, with or without trach, and start our lives over in Las Vegas.
I can only imagine how worn-out you must feel–and I bet the reality is 10x that! Hannah probably wants to be home as much as you do. 🙁 The stress you’re facing would’ve crippled anyone else, Carrie. It may not feel like it, but you’re freaking amazing. So is that girl of yours. Bertrand and I send hugs and kisses to you both!
.-= Cristina´s last blog ..State of the Pookie Report: May 2010 =-.
Long time reader of your blog, first time posting (I know you from KIT). You’re in my thoughts and I check this site daily for updates. I can’t imagine the stress you all are under right now. I’m so sorry! If you get the time, look at this website: http://www.actiondonation.org/articles/Miracle_wings_for_kids.html There are free/heavily discounted medical flights for kids available — that I’m sure Hannah would qualify for. You might still need to pay for the nurse and paramedic, but maybe the flight wouldn’t cost so much.
Darn Aetna. You know, there are private people that fly people with these types of needs without charge. Here’s a list: http://www.miracleflights.org/
http://www.angelflight.org/ http://www.lifelinepilots.org/ and for future reference…. this organization provides free flights for children that need to go to the NIH: http://www.angelflightatnih.org
I’ve heard wonderful stories about the first two groups.
Love you.
Carrie
I’m so sorry about everything that is happening to Hannah. I googled medical flights for kids, and it looks like there are a number of organizations that would do free or lower cost medical flights if there is a proven “need”, which I’m guessing Hannah would easlity be able to prove.
http://www.acor.org/ped-onc/resources/airlineflights.html
Here’s another website for a medical flight charitable organization:
http://mercymedical.org/request-assistance/