Monday, August 02, 2010

Appointment with the Plastic Surgeon

It's been over four and a half years since we've seen Rachel's plastic surgeon. The last time we saw him was at Rachel's post op appointment following her palate repair in November 2005.The plastic surgeon that we've seen the last few years at our annual craniofacial appointments has been one of the other plastic surgeons.

For years, we've been saying Rachel's next major surgery will be when she's between the ages of six and eight years old for a bone graft to repair the cleft in her alveolar ridge. And well, we're at that point of officially discussing the next surgical phase of this journey. Rachel will be six years old at the end of the month.

After talking about the affects of her cleft gum on her speech with Dr. D'Antonio, and another concern we have in regards to her nose, we made an appointment and this afternoon, was our appointment.

Because we keep in contact with Joy, Aiden's Mommy, who also has the same doctors as Rachel, we anticipated a very long wait in the waiting room. Joy has waited for appointments for up to three hours just in the waiting room, not even being placed into an exam room, well after the business day hours have come to a close. Therefore we came well equipped - the laptop, our iPad, snacks, and Rachel's homework! It worked out perfectly and helped pass the time now that WiFi is offered within the clinics. I was entertained on the laptop, while Steven and Rachel watched a movie on the iPad. The almost 2 hours of waiting in the waiting room, waiting to be placed in an exam room were almost bearable thanks to the diversion of modern day technology!

There were four things we had on our list to discuss with Dr. Martin.

1) For months we've noticed this odor. For the longest time, we thought it was Rachel's hands and the constant putting of them in her mouth, dried saliva, etc. But the smell was noticeable even after her baths and being clean, etc. Steven came to the conclusion in the recent mont or two that the smell was coming from her nose. She has an extra flap of skin in one of her nostrils, so who knows what could be going on in there.

Dr Martin thought it could be a number of things.

Cleft children sometimes will have extra teeth up in their gums, going undetected, hard to brush, etc, therefore will decay, rot, and smell.

But after looking at Rachel's nose and seeing the flap of skin in her one nostril, he thought it was highly possible for stuff to just collect there and that's what could be smelling.

2) The bone graft to the aveolar ridge. We've always been told this happens when her permanent teeth start to appear, etc. We've also been told recently that Dr. Martin is doing this type of surgery earlier. And after talking to him, he thinks Rachel is a great candidate for having a bone graft surgery to her alveolar ridge now.

3) The relationship between her upper jaw and her lower jaw is affecting her speech in some areas of pronunciation and articulation and we were wondering if at what point that might be fixed. Because the face doesn't fully stop growing in girls until they are 16-17 years of age, there will be no work done on moving her jaw until then. Dr. Martin thinks her disproportion is minimal and we can wait until she's in her late teens to fix that. We will need to just follow up year year and monitor her growth, etc.

4) Nasal touch up, aka, nose job. Some people don't notice Rachel's lopsided, flat on one side nose. It's not all that noticeable to those she is frequent contact with. It's part of her. It's part of what makes her so cute, in my loving mother's opinion. But the harsh reality is, her nose is lopsided and flat and needs a lift.

When we brought this to the attention of the plastic surgeon at our annual craniofacial team appointment in January, the plastic surgeon we saw had a differing opinion on doing a nose job now. She thought it best to wait.

Dr. Martin's idea is different. His view is that Rachel is at an age where socially, she could start to be made fun of, etc. And thus, he agreed, that a nose lift is in order.So what does this all mean??

It means that we most definitely are at the next phase of Rachel's journey.

Dr. Martin will do a nose job (lift it and make it perky), and he will repair the cleft in her alveolar ridge. He will fix that cleft in her gum by taking a piece of the soft tissue in her hip bone and implanting it into her alveolar ridge. After agreeing that this is the step we want to take, we were directed to the surgery schedulers office and we scheduled surgery!

Rachel will be admitted and have her surgery on Wednesday, November 17th. She will need to stay one night in the hospital, assuming there are no complications, etc.

We scheduled it on this date, as the girls will be on Thanksgiving break and will be out of school for two weeks. Dr Martin says Rachel will be just fine to return to school the week following Thanksgiving assuming she's feeling good, etc.

It feels good to know what's next. Feels good to know we'll be getting it done sooner than later. And yet, it feels like "here we go".

What about all the unknowns-like how will she react to being in the hospital? How will she do recovery wise? Pain tolerance wise? What will her nose look like??

Rachel was just 15 months old the last time she had major surgery. She was just a baby. She's a little person now. How will she take all this?

Two things are for sure: I know we don't have to worry. I have faith in our Lord that He'll carry Rachel, and us, through all of it. We have our loving family and friends and church family who will be praying for her and her doctors, and secondly, that little girl will probably get lots of lovin' from all the above during those couple of weeks of recovery!


carmen said...

So much to take in but all positive news. Jazmine and I wish Rachel and you all the best of luck and prayers. It sounds like she is going to be even cuter than she already is. Keep us posted so we can take this journey with you.

Just A Mum said...

I am glad you have a date for surgery. I didn't realise the bone graft was done so soon. My impression is that it was done around 9/10 years of age. So I am a little freaked out by that!! Contemplating surgery is horrible with all of the what ifs!!

Kim said...

I am happy for you and Rachel to get this date on the calendar! I will be praying.

Did they say if this will affect her speech? Will having the repair make her need to relearn certain sounds?

Joy Howse said...

I am glad that Dr. M. is going to be proactive in his approach to her surgeries in regards to her speech. I really do think that will make the biggest impact. At first when you were talking about the odor I was thinking ear infection. Aiden had that when he was little, with no drainage, no tugging at his ears, no outward signs, just this awful stink. Interesting find though. Hmmm. I have the date marked on my calendar already. PLEASE let me know if you need anything. The best advice I have heard about this surgery is to get up and walk ASAP. The longer they wait the more painful in the hip it gets. They will be scared, but if you wait it tightens up and becomes unbearable. I am still in shock over how fast you got a surgery date. We had to go home and wait to be called for a date. PTL for things working out with her school schedule. :)

Darcy said...

Dr Martin says repairing the cleft in her gum won't affect her speech, but seriously, how can it not?? We have speech this afternoon and I plan on talking to our therapist about it.

Joy - I think the only reason why we were able to get a date is cause we want it in three months and not soon. LOL. Trying to work it around schooling might have helped as well.

It's hard to believe we are at a new phase of this journey. I spent hours online last night looking for blogs of kids who've had this done. I have questions now that I've had time to think about it all and grasp that this is it, we are at this point. So if you know of any blogs that I am missing that you've read about bone grafts, please email them to me.

And Thank you Kim and Joy for putting the date on the calendar.

One things for sure, her blog will sure be a lot more active in the coming months. LOL. The hospital has WiFi now (unlike 5 years ago when I had to make my way to the medical library to update) and I will be able to blog and update right from her bedside....

Allison said...

Wow! It's really happening! I'm already starting to feel nervous, because before we know it, Abby's will really be happening too! I will be praying for Rachel and your family, Darcy. As we all know, Rachel will be amazing, just like all the other cleft kids who have been through this one. It just seems like we're never really gonna get there, and now Rachel IS really there. Ahhhh! Love and prayers all around!

Kelly Rogers said...

I think Dr. M is making the best choice. I trust him and agree that it is better to do the surgery sooner rather than later. But I know how anxious you must be going through surgery again. I will be there in a few years myself and can say I'm not particularly excited about it. We know it's what's best for our kids, but that doesn't make it any easier. I am here for you if you need anything!