Surgery #17 tomorrow 6/16/24

Well tomorrow is the big day. We have to be at the hospital at 10:30am, surgery start time should be around 12:00pm. It will take around 6-8 hours. She had to get her blood drawn today so they can type it and make sure they have blood on hand. Since she has needed a blood transfusion in the past, there's a good chance she'll need some tomorrow. Just your friendly reminder to go donate blood so those who need a transfusion can receive one. 

She's got this and we will get through this one step at a time. We will do our best to keep everyone updated via the blog tomorrow. Thank you everyone for your thoughts and prayers. 

Surgery Date and What is the Lefort III Surgery?

What is the Lefort III aka midface advancement surgery. This surgery will bring her entire midface forward in one piece from her top jaw to just above her cheekbones. They will have to cut along her previous cranial surgery scar to open her up and then they cut her bone just below her eye sockets down to her upper jaw and along the ridge of her nose so that the midface will be just free floating. (see picture below) Then they attach the RED/halo (rigid external distraction device) with 8-10 screws. They made a splint that goes in her upper palate like an expander that attaches to the halo with wires. This allows us to turn the screws 2-3 times a day and it pulls her midface forward, without pain. We will be turning the screws for approximetely 30 days to move her midface forward around 3 cm. Once we are done turning she will still have to wear the halo for around 7-8 more weeks so that the bone can grow and fill in that area. She will then have another surgery to remove the halo.

The most important aspects of this surgery are that it will align her upper and lower jaws, improve her speech, and open up her airway, allowing her to breath better and it gives her the best chance of getting off of her CPAP at night. Even if she needs to have a CPAP after, hopefully it will be at a much lower pressure. It also will "normalize" her appearance. This is probably the hardest aspect of this surgery to us. This is the face we all love and her facial structure changes so much with this surgery, she is going to look different and it's a drastic change and just really hard to prepare yourself for. Surgery is scheduled for June 17th. I find it fitting that her 17th and biggest surgery is on the 17th. She will be in the hospital 3-5 days. She will be in the PICU for at least one night and she will have a feeding tube while in the hospital, although some do go home with a feeding tube. It all depends on how well they do with eating post-op. She will be on soft foods until after the removal. We will start distracting around day 5 post-op.

This is the surgery we all dread as parents of an Apert kiddo, but the benefits outweigh the negatives. We will get through this and soon be on the other side. We have made new shirts to support Braylee through this surgery. It really makes her day when her friends talk about them getting one and seeing people wearing them. So, if you would like to help lift up her spirits you can purchase a shirt at www.bonfire.com/support-for-braylee/

Thank you all for supporting our girl!

Life lately and What's Coming Next

So sorry it has been forever since I have written a blog. Life got busy and then I was hestitant to post an update and jinx ourselves haha. Braylee had a post op check up back in November where he scoped her again and everything was still looking good. She is still doing her medicated nasal rinse. We will have another appointment with him in May, where he will scope her one last time and if everything looks good then she will hopefully be done with those appointments.

 Braylee has been enjoying the 5th grade and we still can't believe she will be in middle school next year! She participated in Special Olympics this fall and did biking. Our state games were in October and because of our lovely Wyoming weather the race took place indoors. She rocked it in 3 different races, placing 1st in each of them! She had so much fun and it was great watching how much fun everyone had. She practiced for snow shoeing this winter but we were unable to make it to the state games this year for that. Hopefully next year. She was going to do swimming for this spring but time got away from us and it was going to be really hard to get in the 10 practices required before the area games so she was ok with not doing it this year. We hope she can do golf this summer, which is with a unified partner so she will be able to be partners with her Dad. 

 She had a titration sleep study done in December which is just a sleep study done with her cpap to check levels and how effective it is. About an hour into the study we needed to change her mask because they weren't getting a reading from her mask type that she has had since she was 2. We had to wake her up to make the switch and it was fight because the new mask has nasal cushions that go into her nose. It took over an hour to get her calmed down and comfortable enough to go back to sleep. But, the new mask worked because they were getting great readings. Her cpap pressure has always been at a 10, which is high for an adult. They ended up bumping her up to an 11 and the results showed that it helped but it still wasn't enough to stop her obstruction completely. They didn't feel comfortable with going any higher so that is where she is at.

 Her teachers this year expressed concern with how Braylee walks and runs. Her feet turn outwards and it just looks like she is going to trip herself up, which she has a few times at recess. The angle at which her feet turn out does seem to have gotten a little worse this year so we figured it was better to be safe than sorry so, I called her doctor and scheduled an appointment. Her doctor said that it is just the way she is structured and surgery or therapy won't do anything to help and they assured us that it wasn't going to hurt her growth or development. She does have twists in her tibia and fibula and that surgery is just absolutely horrible and she would most likely eventually go back to how she was walking in the first place. 

 She has put us through a little bit of a rollercoaster this year medically. She got diagnosed with a sinus infection at the beginning of January by her primary physician in Jackson. We went through that round of antibiotics and it didn't seem to clear it up. I called her surgeon and of course he was out of the office the rest of the week so he prescribed her a stronger antibiotic and if that didn't clear it up then we were to come in. Thankfully that seemed to clear it up. She has had a few big colds since and she'll get a random headache that clears up with ibuprofen and her frontal sinus has been tender to the touch but we haven't seen anything for us to think she's starting to get an infection. I wish that wasn't something that we automatically have to be worried about any time she gets a cold and congested. 

 Braylee has been racing her snowmobile in the local snocross races and she has been loving it! A couple weeks ago she wrecked her snowmobile and it made her fall off and she hit her head on the ground. She was wearing a helmet. She said her head really hurt so we had the EMT on site take a look at her. Based on everything we figured she had a mild concussion so we were to keep a close eye on her for any changes. About 36 hours after she started to really show a hematoma on her forehead and it had an indentation in it. We decided it would be best to take her into Primary Children's to get her checked out. Luckily there was no fracture and they think it was just from her bone grafts that were reabsorbing that blood and fluid. While we were there they noticed that she was congested and with her history they decided it would be best to get a maxillofacial CT along with her brain/head CT so that they could get a good look at her frontal sinus and make sure we didn't have anything going on there. Sadly she's well known around that hospital for her having 2 very rare Pott's Puffy Tumors. That scan came back looking good also. Based on her hematoma and everything they upgraded her to a full concussion so she was limited on what she could do for about a week and a half. She is recovering well and is getting back to her normal self. Sadly a hit to the head is going to be about 3 times worse for her than it would be for any other kid. But we can't let that hold her back from doing what she enjoys to do. Just means we need to take extra precautions when it comes to her head. 

 We had an ice breaker rodeo the other day and Braylee wanted to enter along with her sister Maddee. Braylee and her horse Booger had a few struggles but in the end she made him do what she wanted to do and they finished each of the patterns in barrels and poles. They did good especially with not practicing since last summer. She won a Yeti bucket in a drawing and I don't think anyone could've been more excited to win something. At the end of the rodeo there was a sweet boy who ended up winning 3 buckles and he gave one to Braylee and told her she did great. One of the reasons I love where we live, it is full of amazing people raising amazing and kind kids. She is so happy about that buckle and I don't think that boy knows how much that little bit of kindness means to Braylee and us. 

 We've had a bit of whirlwind with plastic surgeon lately. I got a text a couple weeks ago from a different plastic surgeon saying they got a referrel and we needed to call to set up a consultation. We were really confused and so I called to ask where they got the referrel from and it was her surgeon. After a little panicking and a few phone calls, come to find out her surgeon isn't going to be performing surgeries at hospitals for the time being and only in his in house surgical suites so he passed us onto a surgeon he trusts. Luckily they had a cancellation for the following week so we were able to get in to see him really fast. We had met this surgeon one time prior post surgery and he comes highly recommended by another Apert family that we are close with. In this appointment we discussed everything she has been through and what the plan moving forward would be. This summer Braylee will be having the surgery we all dread but it is also very needed. She will be having the Lefort III, aka midface advancemet surgery. In this surgery they make cuts along her midface, put a device called the halo in place that will move her midface forward and to where it needs to be. Typically we turn for a around 3 weeks and then the halo will stay on for another 8 weeks following that. We will know more details on how long she will have to wear it and how long we have to turn it after he gets more imaging and can make a thorough plan. He is going to order a CT and MRI to get updated images and go over them with the ENT on his team and discuss on whether they need to obliterate her frontal sinus or not. If the hole that they made isn't big enough then while moving her face forward it could block that hole and cause her to have another Pott's Puffy Tumor, so to avoid that he would just obliterate it and remove all of the mucous membranes in the frontal sinus. With this surgery her breathing will hopefully improve and there's a chance she could get rid of her CPAP, not guaranteed but it's her best chance. Her facial structure will change drastically and she will look different and more "typical" you could say. It is a hard surgery to wrap your head around because you can't forsee what she is going to look like when the halo is removed. I will make a post with more info on that to follow and pictures to help describe it. We hope to get this done early on in the summer so she could get it removed before she starts middle school at the end of August. 

 The weather is starting to turn warm, so crazy early but we will get to start riding bikes, driving her RZR, riding horses, and all of the fun things we like to do in the summer. We will try to make the best of it before she gets put on restrictions after surgery. We are so proud of the person she is becoming, she's so funny, a smart alec, trying her hardest in school and still keeping up with her peers for the most part, and the most loving girl ever. We are forunate enough to be her parents and get to watch her grow and see all of the amazing things she does.