Thursday, October 1, 2009

Team visit

We had our team visit today. Sharon, the one who usually is running the show and coordinating everyone, was out on medical leave. And boy was it noticable! She runs a tight ship, and I pity anyone trying to fill her shoes. The guys today did their best, but that didn't change the fact that we spent most of our day like this
waitingarea.jpg picture by sweetteasoakers
instead of in with the docs. It was a lot of waiting and playing with bead tables while John and I sat around looking/being tired. But we made it through, finally escaping and taking our starving selves to Hardees because that was the first place with not hospital food. Bad idea to move the Wendy's out of the neurosciences building, UNC!
So usually when we have a team visit, I give a line by line and specialty by specialty report, but I'm not doing that this time. ENT and pysch and social were all - great kid, looks good, nice family, no recs. Plastics said the same old - we'll do the nose and lip when he's ready but we're fine with waiting until he wants it. Speech was the same - no leakage, huge vocabulary, thanks for coming!
Orthodontics was the part that we were looking for, because of his visit this summer where the molar wasn't in so they couldn't put the expander. We were seeing if the molar would be in now, or what we needed to do. We've been waiting on this tooth for a while now, and it's STILL not in. It's right up next to the tooth beside it, and is hung up there unable to come down on its own. The orthodontist said they could put in a spacer, and that would give it room to come down. And then she pulled up his xray and dropped a bomb in my lap.
june09xray.jpg picture by sweetteasoakers
This one is not labled. I have one labled for you farther down. This is our boy's head. Isn't it lovely? He has all these nice permanent teeth just waiting to come out. Good healthy teeth, some of them teeth that he would not necessarily have. Isn't that exciting?
BUT... Two of his teeth are in a dangerous situation. They are right next to his open cleft. If they erupt into the cleft, the surgeon will have to remove them when he does the bone graft. Meaning two of the teeth in the front of his mouth will be gone - forever.
So the original plan of expanding the palate before bone grafting? Scrapped. The spacer being put in to allow that hung up molar to come down? On hold. Coming at us fast and furious? The bone grafting surgery.
The orthodontist assured me that although they prefer to have the palate expansion done before the bone grafting, they can do it after. She said that we needed to get going on this now, to take away the risk of losing those teeth. Now as in, we need to make an appointment with Dr. T and get a surgery date. Now as in, let's get you set up for more x-rays when you see Dr. T. Now as in, we'll call you with your appointment time.
We couldn't see Dr. T. today because he was in surgery. Good guy. Practice a bunch more before you put your hands on my little boy, okay?
I was not expecting this news. Rowan was not expecting this news. I think the hardest part of all of this (besides going through the actual surgeries of course) is hiding my reaction from him. I can not freak out, or get teary, or clam up, or any of the things I would normally want to do. I have to keep it together, stay calm, and have my happy matter of fact thing going - because anything less would freak him out. He already thought we meant today, and looked at me with his big eyes for a minute. We're already talking about it. Where they will take the bone from (his hip), when it will happen (we don't know yet, but soon), what will it feel like (it will hurt, but we'll give you medicine and you won't be awake for the surgery part at all), what he will eat (LOTS of ice cream and yogurt and blended food)...
We will be talking and talking and talking, because that's how he does it. And maybe we will cry, and that's okay, too. It's okay to cry when you're scared, and surgery is scary. But at least we get to go ahead and get this part of it over with. And then it will be done, and we can move on, right? Because it is what it is, as Heidi says. It's not what we'd ask for, but it is what it is, so we deal with it and go on.
So that's where we are. Waiting to hear when we see Dr. T. Getting a surgery date. Getting a bone graft. We haven't had a surgery for a long time.... but it is what it is.
Here's a labeled xray so you can see what I'm talking about. Any questions? Just ask.
june09xraylabeled.jpg picture by sweetteasoakers


  1. wow that's a whole lot to take in for one day.
    ((((hugs)))) all around. I'll be watching for an update.

  2. Holy cow! Those team days seem like a good idea, but it is an awful lot for one day. Any clue when the surgery will be? I know you are feeling a bit of panic, but do your best to prepare. And having the surgery sooner rather than later is better, IMO.

    HUGS to you. Rowan looks like a rockstar in that first picture :)


  3. No idea on the surgery yet. We have to see Dr. Turvey for the final word, and we only saw one of his residents today. We'll see what he has to say, but orthodontics was pretty firm about needing to do the grafting very soon.

  4. Wow Milli I got teary just reading. Guessing because we are doing the expander now and bone graft is in our future although not as close as yours. Rowan will do great but I loved how you explained it. We "talk" about it all too and it does help. Great to be able to keep those adult teeth. We found out on Monday that Cody has 2 adult teeth missing and we are hoping to keep a baby tooth that's in the palate and more it into position. This ortho stuff sucks! :) Take care - hugs to Rowan!

  5. oh man! Well, Jayton just had to back to back surgeries...first big ones since her was 1 yrs. old. The first was to implant tissue expanders, than the second was the palate repair (fistula, and lengthing the palate). Jayton bounced back to quickly. He totally surprised me! and he did not take a drop of pain meds! Jayton has been on a blended only diet since Sept. 10 & will not be done until Oct. 17- Rowan will do GREAT! I soooooo wish that we had such a great team experience like you are receiving. His plastic surgeon is wonderful, but his orthodontist is here and we have no clue about a palate expansion or bone graft which annoys me! BIG hugs from Idaho!

  6. Ugh.
    Zachary just had surgeries in July. He had a p-flap and a nose revision. So I know hou you feel... this was his first surgery(ies) since he was 1.
    We're supposed to start the 'ortho' stuff soon too. Like December. I dread it too... I know we're in for a similar ride. :( For what it's worth, when we were talking to the PS about Zach's future bone-graft surgery, asked about the pain. He said it doesn't 'hurt' as 'much' as it used to. I think they do it a different way??? (I wasn't paying that much attention - my eyes were glazed over thinking of just getting through the surgeries in July) I guess there's still some pain, but he said the way the bone is harvested now doesn't leave the kids limping and pained anymore. He described it as more of an ache. Then again, I've not had to experience it, so I don't know.
    Prayers for Rowan from NJ
    Remember, the only way to the other side is through it. :)