Thursday, January 31, 2008

Sleep Study Results

Ron and I met with the doctor about Peyton's sleep study yesterday. As expected, her sleep apnea is "severe" (it was before this study). She woke up around 77 times an hour through the study. The doctor did want her to be put on the BiPAP machine at home. We had a very long discussion with the doctor about this. She said it was something to think very seriously about as it is a form of artificial ventilation that would breathe for her at times. We debated whether or not the benefits of this machine were better than the benefits of being on oxygen alone, as she has been for several months now at night. The doctor also mentioned that prolonged use of the mask could cause "facial remodeling", and as Peyton already has a significant dip in the top of her nose, she felt like it could make that worse and affect her breathing. It was a lot to consider - definitely a serious issue. She commented in general terms that kids with neurological impairments often pass away from respiratory issues, so it's important we do what is best for Peyton. If her brain doesn't tell her to wake up when she stops breathing, that could be very bad for her.
So, for now, we are going to continue on oxygen alone at night. I did send a copy of the study to the pediatrician and we'll let her put in her two cents regarding the BiPAP machine. We'll see what she has to say.
On the insurance front, I have submitted a formal complaint against my insurance company to the Texas Board of Insurance. Hopefully that will have some effect in helping to turn around all these denied therapy claims which still remain unresolved.
In positive news, for the first time, Peyton finished a complete "squeeze bottle" serving of her food using the new method the feeding therapist recommended. Granted it was only about 3 oz and was fed throughout the afternoon, but she finished it!
Not too much else is going on. I think all of that is enough!! I'll keep you upated on how everything turns out.

Monday, January 28, 2008

A New Sleep Study

Peyton finished her sleep study early this morning. The official "wake up" time was 5:48 am, although I think I personally only slept for about 15 minutes all night. As expected, the process of hooking Peyton up to all the leads was like torture for her. Instead of starting her out in a crib and trying to get her to sleep there, they started out with her in a bed with me (that proved to be easier last time). She did fall asleep eventually, but it was restless for her. She would only sleep curled up with me with her head resting on my arm. Any time I shifted, she would cry. I was practically falling out of the bed, but she was "comfortable". I could barely feel my arm this morning! Peyton is normally on oxygen at night but I was told if the central apnea was severe enough, they'd put her on a BiPAP machine. At some point during the night, they did have to do that. She SREAMED like I've never heard before. It was absolutely awful. She would also kick and throw her arms every time she screamed. Every so often, about every 30 seconds she'd do this. Then it was just an angry cry, then a cry, then a moan, then it was just the legs/arms kicking. I thought she was finally getting used to it, but after about an hour the nurse came in and took the mask off and put a different on one. She hadn't been sleeping that whole time and they needed to find a better mask for her. She seemed to tolerate it a bit better from the start, so that was better for her. But her sleep was horrible after that. Very restless.
I am assuming since she was put on BiPAP that she will have to be on BiPAP at home now. They do not tell you any results at all as it is like going for any test - you never get the results right then and there. I was told to schedule the follow up visit for within two weeks. When I called this afternoon to set that up, the lady told me the doctor who heads up the sleep center wanted Peyton in Wednesday - two days from now. SO - I can gather from that that her central (neurological) apnea has worsened and that she'll likely wind up on BiPAP at home. Of course, they can't tell you anything over the phone. I'm pretty good at assuming medical stuff sometimes, though! :) After her first study, done May 19th, her follow up was actually not until July 23rd. However, her pediatrician received the study report and put her on oxygen on June 21st before "officially" getting the report from the sleep center. So, that right there tells me that this time around it's more urgent to get in to see the doctor at the sleep center.
I just called the pediatrician's office to let them know what's going on so they can be looking for the report to come through. It will also help us to be able to get a pulse ox monitor for home that is permanent, unlike the one we currently rent.
Poor Peyton looked pretty beat up once I got her home, but she was in good spirits. I came home, got her bathed and ready for the day and sent her off with Ron and Moira to be dropped off at the babysitter's. I went back to bed. Not for long enough, but it sure was nice to sleep!! I'll go to the chiropractor at 5:30 and then pick up Peyton. Hopefully I'll get to bed early tonight as I'm still fairly exhausted!
I'll update the site once we have the report on Wednesday.

Friday, January 25, 2008

A Ball of Stress

We are continuing to struggle with this whole insurance mess as far as Peyton's physical therapy goes. It was deemed that her therapy was "not medically necessary" which, if you've ever heard anything about Peyton, you'd know how ridiculous that was. It's become an absolute nightmare that we are fighting every single day. It is, of course, not without its effects on us. My chiropractor wasn't even able to adjust my neck the other day because it was so locked up from all the stress. I did appeal the denials, but unfortunately my HR benefits advocate is now backing down and basically saying she wants limited involvement. She informed the insurance company of my decision to appeal without allowing me to gather and sumbit supporting documentation for my appeal. So, my appeal is simply based on my statement "I want to appeal." and is going to be based on all the same information they allegedly have on file for Peyton's claims. So, I'm not exactly sure how that works, but it looks like we'll very likely be out of pocket for nearly 2 months worth of visits (mostly 3x/week during that period). It is absolutely ridiculous.
The hits just keep on coming...
Last Saturday, Peyton's hearing aid (the new one that replaced the damaged one before the holidays) died. It just doesn't work. I don't know why. So, she's again down one hearing aid. Then a couple days ago her right contact lens broke. So, she is down one lens until we can get a replacement.
In positive news, her therapy is continuing and Peyton is making improvements, so that is good. She had a feeding evaluation on the 14th and we're implementing a new method of feeding her which, hopefully, will lessen the risk of her aspirating her food and get more food into her in a safer way without having to resort to a feeding tube yet.
Peyton is going for her 2nd sleep study this Sunday night. That should be fun. It was like torture for her last time, as they hook her up to so many things. She only slept about an hour, in the last hour of the study (or maybe that was me...). So, when the study ends on Monday at 6:30 am, I'll take her home, get her ready to go to her babysitter, send her off with Ron who will be leaving to bring Moira to her daycare, and I'll go back to bed and enjoy my vacation day, hopefully mostly with my eyes closed. I need a rest!!
Not too much else is new...mostly just the negative/stressful stuff that we wish would end soon! I keep hoping things will improve, but no luck so far. If this is some kind of test of our strength as a's getting to be a bit much! If it is to show us no one ever said life was fair...yeah, we get that. There must be some meaning behind all of the struggles that we are going through. It just hasn't revealed itself yet. So, we just keep pushing forward, hoping to achieve some kind of life where things just kind of flow along at an even pace rather than have these extremes we're going through now.
I'll keep you updated on how Peyton's sleep study goes. Have a great weekend.

Thursday, January 10, 2008

Not Medically Necessary??

Insurance! Yesterday I was very mildly hopeful for a bright start to 2008. The brightness has dimmed and has all but gone out. Someone with my insurance, in their infinite wisdom, has decided to state that all claims beyond 10/24/07 for Peyton's physical and occupational therapy are deemed to be NOT medically necessary and have been denied! NOT necessary. Do I need to take Peyton to that person myself to show them how ridiculous that is?? Now, that's 3 visits a week since that time that have been denied. They should have be covered at 100% at that point in our medical year. Haven't paid anything yet. This is about to get interesting as once the therapy provider gets wind of the denial, they'll be looking for their money even though, in the meantime, I'll be fighting tooth and nail to make sure we have a successful appeal.
So, at what point does one hire an attorney to fight on their behalf? Of course, that would probably cost more than the claims!
I'm thinking the men in the white coats are not too far away from me right now!! Just another day in the life, I suppose. But seriously, if you are praying people, could you please keep a prayer in your minds for a successful appeal? If we're not successful, this is going to have a serious impact in our ability to bring Peyton to therapy at all as it is quite expensive.
As always, we appreciate your support during our difficult and trying times. This is just the latest of many, but much harder to bear this time.

Wednesday, January 9, 2008

Happy New Year

Happy New Year everyone!
The Fontenot family survived a 3,400 mile round trip vacation to Canada over the holidays!! Peyton was a little fussier than normal on the journey, but she was a trouper. Moira did great. Thank God for dvd players!
It's a new year with hopefully a brighter outlook ahead. Peyton seems to be doing very well these days. She's getting heavier, that is for sure! She seems like she's getting a lot bigger. She's happy all the time. Her eyes seem to be doing really well since she had that surgery a month ago. I need to find out when we have to go back for a check up, but I don't see any problems myself. Peyton is also improving in her head control and is tolerating being on her stomach more and more. She seems much stronger, though we still have a long road ahead with her therapy.
In the coming weeks, Peyton will have a speech and feeding evaluation at Texas Children's Hospital, a sedated hearing test, and an eye exam under general anesthetic to check on the status of her glaucoma. Aside from that, it's routine therapy and a visit to the neurologist for a follow up where he will measure her developmental progress. That should be interesting.
Moira is doing great. She had her first ballet recital at her daycare on December 20th. She was probably the most distracted of the little group of ballerinas, as she was quite excited that her mommy, daddy and baby sister were all there to watch her. It was very cute and we did get it on video to torture her with in about 15 years or so. Yesterday her daycare had a clinic come in to assess the kids who would be 4 by September (including Moira!) in terms of hearing, vision, and speech/language development. I don't have the results yet, but would be stunned if they weren't excellent. To us, she seems like she's a very bright little girl. The only concern I have is that she will squint a lot lately when she's pointing to something, but I kind of think she's doing it because she figured out how, not because she can't see clearly. We'll see.
Aside from that, it's back to the normal stressful daily grind here at home. We hope everyone enjoyed the holidays and wish you all the best for the new year.