Tyler Update

Well its been about two weeks since Tyler's surgery and he is doing awesome. His hip has all but healed at this point, the skin is still kind of dark and the stitch area is pretty puffy, but otherwise it's looking good. It is kind of interesting to compare the two hips as well. You can see where they took the bone from on the hip, there is a little lip where the incision is at. It's pretty crazy.
We are slowly introducing more solid food as well. I am still being crazy paranoid but we've moved into very soft noodles and sucking on graham crackers. I still won't let him have anything too tough but he's sure getting tired of the same old stuff, so I'm trying to mix it up a little and give him more variety. The activity levels are also kind of a bummer for him too. I am having him hold off from things that are too rambunctious right now and that is just straight up horrible for him. We went swimming the other night and I told him I didn't want to go because he still couldn't get in for fear of causing infections in his surgery sites, but he claimed he could just sit on the side and dangle his feet. So we both sat on the side and the poor kid wanted to jump in sooooo bad. I felt horrible. I think we will not be going swimming again until the doctor clears the activity. Poor kid. On the plus side, his pain is improving incredibly. He only has pain meds on days when his hip is really painful, which isn't often. Otherwise, he just runs and jumps like normal (well, maybe no jumps. I get after him for that). He is such a strong kid, I really admire him.
So that is where we are at right now. Things are going well, and all of us are doing fantastic. I hope ya'll have a fantastic week and we shall chat soon.

Tylers Surgery

On Monday Tyler had his surgery, as you all know from my last posts. He did really well. We ended up taking Grandpa along with us and I was grateful he went. I find that I try hard to be independent and do everything myself, but it was nice to have him there to sit with Tyler so I could eat. I always feel bad eating in front of him after surgeries because he can't eat like normal, and this time was no exception. It was nice to have someone to ride with as well to and from so I could look after Tyler a little better. Anywho, we drove up on Sunday after family dinner and stayed at the Plaza Hotel in Salt Lake City. It was a pretty nice hotel, and our room was nice. Tyler's surgery was scheduled for 11:45 am but the doc was delayed so they didn't take Ty back until around 1:00 pm. He was also only supposed to be in surgery for about 1 1/2 hours, but I didn't end up getting to see him in post-op until around 4:00 pm and even then we had to wait for a room, and didn't get into the room until around 5:30-6:00 pm. Tyler was pretty groggy and not feeling great when he got out, but re-couped pretty quickly. He ended up being a rock star and crossing the big milestones (walking, peeing on his own, eating/drinking) really quickly, enough that we were able to get discharged much earlier than planned.
He also had a blast during his stay. Our nurses/techs were all fantastic and made him feel extra special. Our night nurses were the favorites I think though. The tech we had (Mike) was Tyler's favorite. He would come in and watch us play video games, tease Ty about walking too much and just all around having a good time with Tyler.
We got home Tuesday afternoon and have been hanging around home ever since. It's been a blessing to be able to work from home and help Tyler rest. The kids at his summer camp made him a sweet card that they all signed and everyone has given him extra attention which he's absolutely loved. Wednesday he was pretty swollen and miserable, same with yesterday. But today he has been doing awesome. He hasn't had to have the normal doses of Lortab or Motrin that he had to have the previous days and has taken his antibiotic much better. I'm happy to see him recovering soo quickly. He still has a way to go though and that's proving to be rough. He won't be able to eat normal food for about a month, we've got to stick to soft stuff which he isn't fond of since there isn't much he likes. And after that we can't do anything crunchy or tough that requires a lot of biting or tearing, just softer things like noodles and bread. We also have to limit his movements so he can't wrestle and play like normal. But all in all, he is doing pretty good and being a trooper through it all. I'm proud of him for everything he's accomplished and how willing he is to go through the motions of meds, swishing (he can't brush his teeth, so we have to swish with medicated mouthwash) and getting his walking in. His brothers are also being good troopers for the most part, making sure he doesn't get bumped too much and keeping him safe. I'm proud of them all.
So to end....some pictures of our adventures :)

The view from our hotel room, very pretty. We were right next to temple square and the capitol building.

Our pretty hotel room

Tyler was showing his guns in his awesome hospital jammies before his surgery. Mr tough guy. :)

When we finally got to the hospital room after surgery, waving for a picture

He spent the vast majority of our time in the hospital playing video games. While we were waiting to be discharged he challenged Grandpa to a Motocross race. 

His hip dressings after surgery. I'm curious to see what it looks like under the strips. The doc says those should fall off any day now and he has dissolving stitches in which is pretty awesome. 

The poor kid's face was sooooooo swollen. This picture doesn't do justice to just how swollen he was. Luckily, the swelling has gone down. And it is fascinating how the swollen parts get all shiny. Sooo weird.

This is how he's spent the majority of his home time, playing Lego Star Wars. At least he's resting, even though I'm getting pretty tired of the "BOOMP BOOMP BOOMP" of the little guns and light sabers.

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.