Lauren's coming home

The doctor just signed off on Lauren leaving the hospital. She had a difficult night and had to have pain medication every 4 hours. However, she is taking in fluids well and that was enough to approve her release. We will be keeping her at home and making her as comfortable as possible.

Primary's- 2nd Surgery

Lauren has just come out of surgery and is slowly waking up. The doctor said there was some complications that arose. They were unable to fit the splint into her mouth. This was because the incision made during the distraction surgery had started to close and it didn't have the flexibility to move it in the position they wanted. They instead had to grind down the splint and fit it into place. The downside to this is it won't be able to give the added pressure needed to give her the length in her jaw. More or less, we are basically putting her back to where she was before the first jaw surgery. The doctor said there may be some added length but not as much as they originally intended. Her jaw is wired shut and she will be on a liquid diet for the next 3-4 weeks. They said she may be released as early as tomorrow morning. She is unable to really talk and it is difficult to understand what she wants. The room we are in is much smaller than before and we are located on the 2nd floor in room #22. I don't know how visiting hours will work due to the room size and location. I'll try to find out more and post the information later.

Turning.. bad to worse...

So, what a week we have had. We took Lauren in for her check up on her jaw. The Orthodontic Doctor said to stop turning the distractor NOW and that it was distracting the bone the wrong way. On Sunday we noticed her lip was getting pushed and started to worry. Anyway long story short, no more turning the distractor. Her lower jaw has shifted far over and the poor girl has no bite. She is struggling eating and the length needed was not accomplished.

So, after meeting with doctors today, and after a couple x-rays, they want to place a bone stint on her jaw which will move over what was pushed and will lengthen her jaw. They will need a mold on Monday and will do surgery Tuesday. They have to do it quick while the bone is still soft and easy to work with. We asked why the distraction didn't work. They couldn't confirm anything with the x-rays. They said it could be many things, but they think either one of the brackets on the device were loose because young bone is soft, or her bone was not filling in where they had hoped. Pretty much it can't be verified until they go in surgically.

After the next jaw surgery the bummer is her jaw will be wired and she will be on fluids for FOUR WEEKS! That will be the hardest part I am sure. They say it won't be as painful and the surgery will be 2-3 hours. So here we go again. This is not what we were planning on, but we will survive. Lauren is great and never complains. We will update everyone as things transpire. Thanks to all of you for your love and support.

Still turning.....

Well, lets just say that jaw distraction has definately been the most painful for Lauren. We have been turning the distractor now for about twelve days. She does not like it and it seems to be very uncomfortable. I love how the doctors said it "shouldn't hurt." After we turn it, she is fine, but while we are turning it it is unpleasant for not only Lauren but mom. Anyway, we will be turning it until next Monday when we will see Dr. Yamashiro and he will tell us how much longer it will need to be turned. Hopefully there will be an end in sight. She is doing great though. She started preschool and loves it. She is meeting friends and she is a TROOPER. We will keep you posted as we stop turning it and as we prepare for her next and final surgery of the year in October.

Week 2 Post op-Primary Children's

Lauren is pretty much back to the way she was before the surgery. She started preschool this week and doesn't seem slowed down by the surgery. We are turning the distractor every day. It does give her some pain when it is turned initially, but it doesn't last long. We sent new photos to Dr. Lewin in California and she thinks the ear is healing well. We took her to the ENT doctor today to have the ear canal cleaned and have her tragus checked. This is the small triangular piece of cartilage in front of the ear canal. It seems to be the slowest healing area of the ear. The doctor checked it and felt it is looking OK. They recommended putting ointment on it daily to help it heal. We will be planning to head back to California in October for her final surgery of the year.

We are home-Primary Children's

Lauren stayed the night at the hospital with Mom and Dad took the other two kids home to sleep. The hospital wanted to make sure she was taking in fluids and starting to eat. She has been on a liquid diet the last 24 hours and was hooked up to an IV to stay hydrated. She has been in some pain and is unable to eat anything solid. We have been giving her medication for the pain but it puts her to sleep. Which is probably good for her. This afternoon, a doctor came to visit and felt good about discharging her from the hospital. I don't think she wanted to stay another night and would rather be in her own bed. Last night she had trouble sleeping with the pain and the hospital staff coming in every four hours to check her pressure and temperature. I will say we have been very happy with the staff at Primary's. They do such a great job of making the stay for the children as comfortable as possible. The staff is very friendly and took the time to answer our questions.

Lauren is swollen from the surgery and can barely open her mouth. She has some bleeding and draining from the surgery but it should stop after a couple days. For the next few weeks, she will have a small tube that comes out the bottom of her jaw. This is what we use to attach the wrench to and turn daily. We will do the first turning on Saturday. We will give it three complete turns every day. This should apply enough pressure to lengthen the jaw bone 1 MM per day. Once the jaw has gotten to the desired length, we will stop turning and the tube will be removed. The small internal plates that were attached to the jaw will remain with her always. They say it usually doesn't cause further problems, but if they do, they can be removed. It just requires another surgery. Lauren is still a trooper although you can tell this causes her more discomfort than the previous surgeries.

Post Op Update- Primary Children's

Lauren just came out of surgery in the last hour and the Doctor said everything went well. She is still regaining consciousness and they have moved us and her into her room. She will have to stay at least two days depending on how quickly she starts eating and taking her medication. She was in surgery for about 3 hours with another hour for pre and post op. We are in room 3083 and will probably be there the rest of our stay.

Day of Surgery- Primary Children's Hospital

We leave for Primary Children's today for Lauren's jaw distraction surgery. It should be around 12:30 PM that she goes into the operating room. The surgery shouldn't be longer than 2 hours. She will be staying overnight at the hospital. I will let everyone know how she does and if she would be up to getting visitors. I will try to update the blog, however, our laptop has been down.

2 Month Update with next surgery looming

Lauren has been doing very well since the last surgery. So much so, that we forget that she even had the procedure done. The ear seems to be healing well and every couple of weeks we send pictures to Dr. Lewin and she is pleased with it's healing. We met last week with Dr. Motoki. He is the doctor that will be doing the jaw distraction surgery on July 28th. The surgery is intended to lengthen her jaw on the left side. She has been wearing an expander on the roof of her mouth for a few months that has been straightening out her bite and hopefully by lengthening the jaw, she will have a level bite. She will more than likely need braces when she is older. The surgery is only going to be about 2 hours long, but she will have to stay in the hospital for at least two days. They will make an incision in her jaw bone and insert internally a distractor device. This will apply pressure on both sides of the incision to help lengthen the jaw. Everything will be done through the inside of her mouth. She will have a rod that will come down on the outer side of the skin below her jaw. This will be used to turn the device once or twice daily to apply added pressure. We will have to turn the device for approximately two weeks. After that, the jaw should be the length they want it. She will wear the distractor for about 2 months total as the jaw and new bone that fills in will have to harden fully. We are happy that we don't have to travel as far and that the surgery will be less time, but this will be the first time she will have to stay overnight in the hospital. The surgery will be done at Primary's Childrens hospital.

The bandages come off! (3 Week Post Op)

Today we removed Lauren's bandages and protective cup covering the ear. From here on out, she doesn't need the protection. She will still need to keep the area moist as the skin graft continues to heal. The area where the graft was taken is also healing well and her hair is already growing back. We sent some pictures back to Dr. Lewin for her to review. I have included some of those pictures here as well. It really looks amazing and it will continue to get better every day.