Tuesday, December 4, 2012

Absolute Frustration (vent post)

We are moving into a new chapter of Tyler's life and because this process can be absolutely draining and frustrating, I'm going to blog about it. Mostly in hopes that if someone searches Cleft Lip and Palate looking for some insight/common experiences/support/whatever (like I did for nearly 2 hours last night with not much luck) maybe this bad boy blog will pop up and can help.
So...as I said before we knew this surgery was going to happen eventually. It's next on the list and it's meant to happen as he is growing. And as I mentioned before as well, I wasn't expecting it to happen right now but it is what it is.

In my jaded little brain, I figured it would go as the other surgeries had....a day or two in the hospital followed up by a few days off school to recover and taking it easy for a little while after that. Ty has been a quick healer and has handled pain very well, especially for a kid his age. Jaded! I decided to do some research since Tyler has been under the assumption that he was going into surgery very soon and that they would be taking out his whole hip so he has to be in a wheelchair. Poor kid...but talk about brave if he was willing to go through it anyway! This prompted the mass research so that I could better explain what's going to happen.

Well. Based on the few other experiences that I was able to find and read about....our next little (LONG) while will go about like this.

First the mouth has got to be prepped to receive the bone graft, which will include braces and an expander to expand his palate (and maybe other stuff, we aren't sure yet). The timeframes for this have varied a bit between experiences I've read but will probably happen for the next 6 weeks to a year. Although the people we've talked to say that he's just about ready based on where his permanent teeth are sitting so I'm thinking it probably won't be a full year. 
After this part is done, the actual surgery will happen. It should last between 2-5 hours and they will take a piece of his bone from his hip and graft it to the space in his gums. Timing for this stuff is pretty vital so that the bone takes and we don't have to do repeat surgeries or have it not work at all. So I figure the surgery will all be dependent on the pace of his growth. *More on this part in a bit* The recovery processes for different people followed the same general outline, but the timelines varied per experience so I really am not sure what to expect. All I know is it's going to be tough.
Most kids were in the hospital for between 2-4 days for IV antibiotics to be given after the surgery. From there, it gets complicated. In regards to diet, the first 3 weeks - 3 months (yeah it varied that much) is a strict liquid diet. From there the next 3 weeks - 3 months is "no chew" soft foods like mashed potatoes and oatmeal. After that, they transition into soft foods like mac & cheese, bread, and things like which are easy to chew for the next 3 weeks - 3 months. Then they can start adding in harder foods after that carefully.
In regards to movement, the first 2 weeks was very limited mobility (I'm assuming for the hip) which means nothing strenuous. Not even room cleaning. For the next 3 months it's nothing hugely physical (running, jumping, rough housing, sports, etc, etc, etc) both for the benefit of the hip healing and to prevent anything from happening that would bump the jaw/gums and prevent the bone growth from happening correctly. After that, activity can be eased in as he feels up to it.

So today we saw the oral surgeon and I was hoping that I would get a better idea of what to expect during OUR experience instead of trying to judge off of other experiences. And.....I was wrong. I'm a bit frustrated by the whole deal because I was really hoping we could build our own oral team down here so we wouldn't have to travel to Salt Lake every time we needed anything. But the oral surgeon so kindly took a $350 3D facial image just to look for a minute and then go on and on AND ON about how it's really hard to read sometimes because kids can't hold still for 45 seconds so it gets fuzzy, and how it takes him a while to see all the different fields of the 3D image. Blah. And then proceeded to tell us that he won't touch our case. Back about 10 years ago he tried to start a cleft team down here but the team up there (our SLC cleft team that I'm trying to get away from) blocked them from starting anything down here because they were the cleft team for Utah and on and on....and he hasn't done many cleft bone grafts so he didn't want to do ours. So....the 3D image and 45 minutes we spent there (and $350 for the 3D image) were for nothing. In my mind anyway. My Mom tried to tell me it was worth while, but I'm still too irritated to think so. And I get and appreciate that the surgeon was honest and let us know he didn't feel comfy completing the surgery. But why couldn't he just call and tell us that? 

Needless to say I'm extremely disappointed and no more closer to being able to prepare myself (and Ty) for what is to come than when we started. I do know that I really wish I didn't have to go to the team up north. But it looks like that will be what's happening and so we go from here. Getting any sort of appointment with that team is usually months out, so I'm hoping they are coming down to St George soon so that we can just see them there. I also really hope they don't block out our Dentist/Orthodontist here locally from helping us because they aren't part of the "team". I wouldn't be surprised if they did though. 

Oh another gem I learned at the surgeons office....CHIP doesn't cover jack when it comes to oral surgery any longer. They wouldn't except it anymore anyway because it never covered anything. And neither does pretty much any other health/dental insurance according to them. So even if I fight to get health insurance, it probably won't do any good for Tyler. Still going to try for our basic needs of course, but I'm soo irritated by the fact that something that is considered medically necessary isn't covered.

This brings us to the financial burden. The parents have offered to help facilitate anything that needs to be done because it is for the greater good of Tyler. Which I appreciate. But I hate that my financial burden and stress is going to be pushed onto them too. I'm sure a big chunk of it is a pride issue as I really don't want to have to have help. I hate the fact that I can't do this on my own. But....sometimes a parent has to suck up the pride to do what's best for their child. So I'm trying. I really am.

So...I guess my next step will be to figure out a doc appointment. I have a strong urge to talk to the Orthodontist in Cedar before I call up North, so I'm going to work on that tomorrow. Then call up to the team to schedule an appointment with them for whenever we can get in. And then I don't know. I guess just play it by ear from there.

So anyway. The perk is that we don't have to shuffle out quite so much money as soon as I thought....that's good. That helps. And that gives me time to figure out what to do for insurance. Granted we'll have all the expenses for travel/dr appts/work done in the meantime but at least its not a big hunk of money all at once for surgery.

So...I'll post more when I know more. Hopefully. Thanks for the prayers and happy thoughts, they brought peace to my heart and helped me have a little reassurance that this will all work out somehow. I truly appreciate it. So...time to go start researching AGAIN. Have a good night ya'll and thanks for listening to my rant.


  1. Wow how completely chaotic. I'm sorry. Don't feel bad about mom and dad helping you just vow to pay it forward when your kids are grown

  2. I know right? It's kind of ridiculous....but it is what it is. And there is always a light at the end of the tunnel!