Thursday, December 10, 2009

Grandpa Ottley and Lauren: Update 13

Lauren celebrated her 5th birthday this week and she was very excited. She has been healing very well and there have been no problems so far post surgery. She got some new ear rings for her birthday so that she can show off her pierced ears. She is still wearing the upper retainer in her mouth that we have to turn each day. It has come loose a couple times now and we have had to go in and have it repositioned. She will have to have it tightened for another month and then keep the device in place another couple of months afterwards. I hope to post some new pictures of her ear on her soon.

Grandpa Ottley hasn't been back to work the past few weeks. His shortness of breath is gone, but he has had pain in his arm and hand again. He visited the neurologist this week and he seems to have some nerve inflammation that can only be improved with surgery. He meets with a neurosurgeon next week for a consultation. The surgery is an outpatient surgery and shouldn't be much of recovery period. Sounds like he should feel improvement immediately.

Friday, November 27, 2009

Grandpa and Lauren: Update 12

Grandpa Ottley returned to work last week after being cleared by the doctor. By Thursday, he was feeling pretty worn down and that night he started having shortness of breath. Friday morning he felt like he should go to the hospital. We went to the emergency room and they put him through all the standard tests. They think that due to his high activity that week, he started to build up fluid in his lungs and it caused the shortness of breath. They ruled out another heart attack and just felt like his working that week was a bit too much for him. Since then, he has not worked this week and has been trying to get his strength back. They prescribed medication for him to take to help get rid of the fluid and also started him back on regular breathing exercises again. Hopefully he will rebound soon and be able to get back to work if even on a limited basis.

Lauren has been doing wonderful. She is healing well and hasn't been slowed down at all. We had the expander fitted back into her mouth and she'll have to wear that for another month or two. We are planning to have a CT scan done here locally for her jaw in the upcoming month. We want to send this to Dr. Urata in California to get his opinion of her jaw distraction. He did see her in his office when Lauren was having the surgery last month. He felt that he would probably wait to distract again for a couple years unless we are able to fix it orthodontic ally. Other than that, things with her will slow down a bit. We will continue to post photos of her to show the progress of the healing to her ear.

Tuesday, November 3, 2009

Grandpa and Lauren: Update 11

Grandpa Ottley met with Dr. Jones today. He is the surgeon that performed the triple bypass just over a month ago. The checkup went very well and he said he is showing very good signs of recovery. He removed many of the restrictions that were given when he was originally discharged from the hospital. He feels he should be ready to go back to work as soon as he feels strong enough to do so. He has still been having pain in his left arm and fingers. The doctor feels this is not from the stroke as we first thought but rather the nerve near his elbow was irritated during or after surgery and it has become inflamed. He recommended taking anti-inflammatory medication for the next few weeks and if it doesn't improve, he would like to set up some rehab therapy for him. His vision is still limited in his left eye and that is a result from the stroke. We are hopeful that it improves over the next few months. He is continuing to get stronger and is trying to walk each day. The doctor gave us the impression he is ahead of schedule in his recovery and left it up to him to gauge his limits.

Lauren had an appointment with Dr. Yamashiro at Primary Children's Hospital so that she could be fitted for another expander device that will be put in to place next week. I am not sure how long she will have to wear it this time. This is the same device she had to wear earlier in the year. It is a bit uncomfortable for her but she adjusts pretty quickly to it. Her ear is healing nicely and we will continue to monitor it and send pictures to Dr. Lewin so she can evaluate them.

Friday, October 23, 2009

Grandpa and Lauren: Update 10

Both Grandpa and Lauren have been recovering. Grandpa Ottley had a doctor appointment this past week and was given a good report. However, that same day he was experiencing extreme discomfort. He woke up that night with pain in his back and arm as well as felt lightheaded and cold sweats. The doctor wasn't sure what the issue may have been but by later in the day it seemed to go away and hasn't happened since. Lately he has been feeling tired and has not had much energy. The doctor feels like he should be able to make a full recovery and also be able to go back to work. It will still be many weeks or months before that happens however.

Lauren has been doing great. She has all her bandages off and is back to school. She had a field trip today to the new hospital in Riverton. I don't think it was too exciting for her given all the hospitals she has been at this year. The teacher wanted to take the class there so that they would know that it isn't a scary place. As for now, we are just going to be sending photos to Dr. Lewin every few weeks and make sure that she is healing well.

Thursday, October 15, 2009

Grandpa and Lauren: Update 9

Grandpa Ottley has been resting since coming home from the hospital yesterday. It has been much more comfortable for him at home versus the hospital. He has a lot of medications he has to take daily and is limited in what physical activities he can do. He is glad to be home. His vision in his left eye is still poor from the stroke and we are hoping that it will heal itself and he will be back to 100% again.

Lauren returned back home last night and is doing well. The doctor examined her yesterday and felt that everything is looking great. She has a protective cup over her ear that she must wear for 5 days. She will probably be able to go back to pre-school tomorrow. This should be the last surgery for this year. She may need additional jaw distraction in the future and will also have some orthodontic work done to help with the jaw as well.

Tuesday, October 13, 2009

Grandpa and Lauren: Update 8

Looks like Grandpa Ottley will be coming home today from the hospital. He will need 24 hour care for the next little while as well as have a therapist visit with him to continue his rehab.

Lauren is going to Disneyland today. Mom doesn't want to overdue it with her so we will see how she does.

Monday, October 12, 2009

Grandpa and Lauren: Update 7

Another good day for both our patients. Grandpa had the remaining of the tubes removed and has been eating well. He does physical activity each day and is getting stronger. He may be discharged as soon as tomorrow. This is amazing considering where he was at a week ago. He will be able to rest at home and they will be provide some therapy sessions at home for him.

Lauren is also doing well. She is still a bit gimpy after the surgery but she was able to go to a movie today with mom. Tomorrow they are going to try a day at Disneyland. Friends of ours are down there so it will be good for them to meet up. They will be coming home Wednesday night. She has one more doctor's appointment on Wednesday afternoon in Beverly Hills.

Sunday, October 11, 2009

Grandpa and Lauren: Update 6

Last night I visited with Grandpa Ottley and he was doing very well. He is still catching up on sleep and is getting stronger. He has been moved out of the ICU and is on the 4th floor rehab unit . He is in room 425. The doctor came in last night and felt he is recovering quickly now and will have most if not all the remaining tubes removed today. He will be doing some physical rehabilitation and depending on how well he responds, he may be released soon. He says his vision is starting to improve and that is a good sign after having the stroke. Visitors are now welcome but the hospital would to limit them to two at a time.

Lauren is recovering well after surgery. She was a bit sore yesterday and mostly stayed at the hotel. We hope she rebounds quick enough that she may be able to go to Disneyland for at least one of the days.

Saturday, October 10, 2009

Grandpa and Lauren: Update 5

Good news again with Grandpa Ottley. I spoke with the nurses in the morning and they all told me how much he slept the night before and that he was a different person. I was able to visit him later in the evening and we talked for about two hours. He seem very much back to being Rollie again. He is still confused about everything that has happened the past two weeks. Many of the delusions he has had he thought were real. We spent most of the talking about them and letting him know they didn't happen. He seemed relieved to know they weren't. It will probably take him some time to sort out everything. His white blood cell count is slowly coming down and if it continues, he will probably be released from the ICU and moved to the rehab building next to the ICU. His vision is still affected by the stroke and he will have a lot of rehab to do to strengthen his body and adjust his vision. We hope that his vision is restored back to normal. The hospital staff wanted me to mention he can have visitors now and in the rehab center but only two at a time and no visitors under the age of 14.

As for Lauren, her surgery was a success yesterday. Dr. Lewin was very happy that the infection was not a problem and she could complete everything she wanted to do in Stage II. She repositioned Lauren's ear and placed new skin grafts over the framework. There were two graft sites she took from. One from her other ear and another from her stomach. The stomach area will be the most painful for her in the next two days and they have given her a device that pumps local anesthetic to the area for the next few days. They also gave her some fat injections around her cheek and jaw to even out her symmetry. They had a hard time finding any fat from her stomach to use for the injection. Lucky her. She also was able to finally get her ears pierced. All in all it was a long day for Becky and Lauren.

Friday, October 9, 2009

Grandpa and Lauren: Update 4

Well so far we have had two days of good news. I spoke with the nurse and Grandpa is doing pretty well today. She said he slept most of the night and since he has woke up this morning they have been doing some physical activities. He has been up walking around and doing other exercises. He is not restrained anymore and seems more calm. They are still concerned with his white blood cell count being high. They are unable to find the cause, but it has been slowly coming down. If that is taken care of he will probably be moved to the rehab facility.

Lauren is currently at the hospital in Beverly Hills and will be going in for surgery soon. Dr. Lewin's mentor Dr. Reinisch examined her yesterday and feels like what she has is not an infection but rather a pocket that developed with her skin graft. This is good news because it may mean she won't need any additional surgery and that the Stage II procedure can be fully completed. It will all depend on how well the surgery goes and what Dr. Lewin would like to do going forward. The surgery is scheduled for 10:45 AM Utah time and should be about 4 hours. I will try to put an update on here later with the results.

Wednesday, October 7, 2009

Grandpa and Lauren: Update 3

Good news for both Grandpa and Lauren. There was a big difference in Grandpa Ottley today than yesterday. He seemed more relaxed and comfortable. He is still a bit delusional, but compared to last night he was a complete turn around. The neurologist visited while we were there. She said he has suffered a small stroke to the right rear area of the brain. This could of occurred during surgery or after and she is unable to know exactly when it happened. The main symptom he is suffering is vision is limited in his left eye. She said this is supporting of where he had the stroke. The good news is she feel he will start to recover. He has a chance of his vision returning but will need extensive rehabilitation to either regain his vision or adjust to not having it. They hope to get him out of the ICU soon and into a more comfortable room on another floor of the hospital. He seemed to be sleeping on and off during our visit which is also wonderful to see.

As for Lauren, I got word from Becky that her and Lauren arrived safely and checked into their hotel room. They are 3 miles from Disneyland so I think Lauren is anxious to go again. Lauren got sick on the flight because of the antibiotics she was prescribed to take and didn't have much of a breakfast to wash it down. Dr. Lewin at the appointment was much more positive about her situation now that she has seen her ear in person. She is feeling good that they have caught it early and will be able to treat it without replacement. She may still need another surgery in the future as a follow up, but they hope to do as much of the stage II procedure that they planned on. Lauren will meet with the doctors again tomorrow before she has the surgery on Friday. It should be about a 4 hours procedure on Friday.

Grandpa and Lauren: Update 2

Lauren and Becky left this morning for California. They will be there for the next 8 days and the surgery will be on Friday. The doctor hopes the infection is not so extensive that she can save the ear. Otherwise, she may have to start over with new framework. This was to be her last surgery but now she may need another trip to California in the future. The rest of the family and I are staying home and taking care of everything else.

Grandpa Ottley update is not good news. He has continued to be delirious and was not making improvements. They did a CT scan yesterday and found that he has suffered a stroke. We don't yet know how severe or what this means to his recovery. The neurologist will review the scan today and I hope to have more information after that. The nurses said he didn't sleep much again last night. When I left last night, his eyes were closed and he seemed to be sleeping but the rest of his body couldn't stay still. He looked much more exhausted. He isn't speaking as much now which may be a cause of lack of sleep.

Tuesday, October 6, 2009

Grandpa and Lauren Update

Grandpa had a lot of visitors yesterday and seemed to be about the same. He is physically strong but he is still hallucinating and is very delusional. The doctors say that he may have these symptoms for the months to come. However, they hope that he will start to clear his head in the upcoming week. One of the biggest issues is lack of sleep. He was given something last night to help, but it didn't work. He has probably gotten less than 8 hours sleep over the past 5 days.

As for Lauren, we got a surprise last night as well. Her ear looks like it is infected. The doctor told us to call right away if we saw any signs. We called Dr. Lewin and she wants to move her October 23rd surgery up to this Friday. There is concern that maybe during the last surgery for her jaw two weeks ago she picked up an infection. We are frantically making travel plans. Due to everything that has happened, Becky will be taking Lauren to California and I will stay behind. She will be there with her from the 7th through the 14th. The surgery is scheduled for the 9th.

We are asking any friends or family to fast this Sunday for Grandpa Ottley. We would also like to include Lauren now as well.

Monday, October 5, 2009

Grandpa Ottley: Update 8

Grandpa has been doing well physically. He has been up walking around and sitting up more. The concern now is his mental stability. He has been very delusional the past few days and they attribute it to him slowing getting off all the post op medication. It is frustrating to see him like this and not be able to talk to him. He has been having hallucinations and gets confused about where he is at. Other times, he seems as though he knows exactly what is going on. I know he hasn't been getting much sleep and I have talked to the hospital staff about getting him some sustained rest. Last night he got about 4 hours of off and on sleep. Since he is still in the ICU, visitation is difficult. I think until he starts coming around mentally, it would be good to limit any visits.

Saturday, October 3, 2009

Grandpa Ottley: Update 7

It has been over a week now since the heart attack and surgery. Last night, Grandpa was much more alert and calm. At times he still would get fidgety and a bit delusional. The nurse and doctor said this is common and is sometimes referred to as ICU delirium or "pump" head. Many times after bypass surgery, the patients demonstrate this tendency because of the lack of sustained sleep they have had, the medications they are taking, and the energy the body uses to heal. After speaking with the nurse this morning, they said he slept well and is showing really good signs of recovery. They would like to remove his chest tube today and have some evaluations done to verify if he can now have water or liquids.

Friday, October 2, 2009

Grandpa Ottley: Update 6

Good news today! Grandpa has had the breathing tube removed. Last night watching him have to struggle with the tube was very disheartening. He has built up a lot of fluid in his lungs so they have wanted to keep it in until he had gotten stronger. The nurse told me he demonstrated his strength by kicking him in the head the other night. Last night I saw him wear himself out sitting up in a chair trying to take the breathing tube out and take off his restraints. I kept thinking he was analyzing the problem as a mechanic and find a way to untie himself. Now that the tube is out, he can talk and communicate better. He is not able to have any water yet until his throat has had some time to heal. The nurse felt that as soon as the breathing tube was out he will recover much quicker and move out of the ICU soon. We hope that is true. He will be able to have more visitors once he is out of the ICU. Thanks for all your prayers and thoughts during this time.

Thursday, October 1, 2009

Grandpa Ottley: Update 5

Last night when I left Grandpa Ottley, he was doing about the same. The balloon is out and is able move around more freely. However, the breathing tube remains and it may be a day or two until that can be removed. Last night he wanted to pull it out, which the nurse said would be very bad and they would have to put it back in. His hands are restrained so he can't reach the tube. He is still medicated but mostly to reduce the anxiety. They try to have him sit up multiple times during the day to rehab and get some of the fluid in his lungs expelled. The hope is to remove the tube tomorrow if all parameters are met.

Wednesday, September 30, 2009

Grandpa Ottley: Update 4

The heart pump was removed yesterday and he has been stable without it. They are going to slowly ween him off any sedation to try to get him up and alert. He has been a bit agitated during this process when he realizes there still is a breathing tube attached. That should be the next big step to have that removed and it may take a couple of days. The nurses say it is very uncomfortable for them to have in, but it is another way to help his body take some of the load off his heart. It is still not a good time to visit yet. It probably will be better once he is out of the thoracic ICU.

Monday, September 28, 2009

Grandpa Ottley: Update 3

Today he has been resting well. They felt he was doing well enough they were going to try and remove the balloon in his heart, but he was not quite ready yet. They will try again tomorrow. His medications have been coming down so that means his heart is getting stronger. If the balloon is removed, that will be a big step toward him gaining consciousness again.

Sunday, September 27, 2009

Grandpa Ottley: Update 2

Today, Grandpa Ottley has made some progress. He is becoming more stable and is starting to show positive signs. They reiterated today that he has been very ill the past couple of days and that he has been their sickest patient. However, he looks much more comfortable now and seems to be doing better. Tomorrow, they would like to start working on scaling back using the balloon that has been placed in his heart. It inflates and deflates with each beat of his heart. It is there to take a lot of the load so his heart can heal and strengthen. He is still unconscious and sedated most of the day but has shown some response. They still ask that visitors be limited so they can continue his improvement. After speaking with the doctor today, he may be there for at least three weeks before he is released.

Saturday, September 26, 2009

Grandpa Ottley: Update


Grandpa Ottley had triple bypass surgery yesterday and is still in recovery. Overall the surgery went well, and the procedure took 5 hours. He has been in the Thoracic ICU and will be there for the next few days. He has been slow to recover. They are struggling to keep his blood pressure stable and they say that due to the heart attack and surgery his heart has taken on a lot of stress and trauma. They say he has made some improvement this morning and would like to keep that improvement going for the next couple days. If they can get him stable, they can remove the breathing tube, heart balloon, and also reduce his medication intake. As of now they keep him very sedated and he is unable to communicate verbally. Visiting at this time would probably not be beneficial. The hospital staff and doctors say visits are allowed but they would like to keep them brief until he is more stable and alert.

Friday, September 25, 2009

Family News: Not pertaining to Lauren

We have had another family medical situation come up and I thought I might be able to use Lauren's blog to spread the word to any family or friends that may want to know. Lauren's Grandpa Ottley suffered a moderate heart attack yesterday. He has been admitted to the Murray, Utah IHC hospital. After numerous tests, it was determined he would require immediate triple bypass surgery. He is currently in surgery and will be in recovery for the days to come. I will try to update the blog as much as I can.

Tuesday, September 22, 2009

Let's try this again

Hello All. We just got home from yet another jaw surgery. Luckily, it was just to remove the wiring and splint in her mouth. It was all out patient and we are home already. She is FREE again. We don't know what will happen with her jaw. We will visit with the orthodontist next week to see what he thinks. After that, next month we will visit with a jaw specialist in California who is a friend of Dr. Lewin and get a second opinion. We are pretty frustrated with what has happened with her jaw and are looking to get some better answers. Moving forward the best part is she can EAT again. Thanks to everyone again for all of your support.

Wednesday, August 26, 2009

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.

Tuesday, August 25, 2009

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.

Thursday, August 20, 2009

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.

Thursday, August 13, 2009

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.

Friday, August 7, 2009

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.

Wednesday, July 29, 2009

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.

Tuesday, July 28, 2009

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.

Thursday, July 16, 2009

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.

Wednesday, May 27, 2009

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.

Saturday, May 23, 2009

Thursday, May 21, 2009

Well, we made it through Lauren's final post op. We flew into Los Angeles just for the day, (Thank you Tauni!) May 20 for Lauren's last post op appointment. Dr. Lewin is very pleased so far with the results. She said Lauren scores an A if she were to grade her progress, but kids heal differently so she wants to see pictures regularly as Lauren heals. Due to our employment situation, Dr. Lewin also has decided to move her second stage ear surgery to September so that we won't have to maintain COBRA for as long. She is great and treats patients more like family. She is the only doctor we have met, and we have met lots, that gives hugs and seems genuinely interested in our family.

So, as far as Lauren's ear, we will leave the bandages on for one more week and then we just have to keep it super moisturized over the next couple months. Her ear is still swollen and it will take over the next several months for the swelling to go down and for the ear to become more defined. We think it is beautiful and are amazed every day at the modern medical miracles.

Now on to the next surgery. It will be on July 28 and will be on her jaw to lengthen it a bit. We are so happy it will be here in Salt Lake City. Thank You so much to family and friends who have helped us in so many ways! Without all of your support we would not have been able to get through this.

Wednesday, May 13, 2009

Day 10 & 11: Coming Home




Well we made it home! We were very excited to be back in our beds again. The other two kids were sleeping when we got home so we didn't see them until today. Cameron was very happy to see Mom again before school. Kara was also excited but that wore off quickly. She was glad to have someone to play with today.

The appointment with Dr. Lewin went very well yesterday. She was happy with the progress so far. We saw the ear for the first time. It appeared very swollen to us, but the doctor said that comparatively Lauren's is much less swollen than she normally sees. She got her hair washed and her bandages changed. I included her before hair washing picture because I don't think we will see her hair like that again. The doctor is very pleased with her swelling and the lack of cleaning she had to do. The skin graft looks great so far and we just have to hope and pray that she will heal well. It sounds like how they heal is the one big unknown in this whole process. Becky will fly back with Lauren a week from today for another checkup and dressing change. After that, we are on our own. We will send the doctor many updates and photos so she can review her progress in the upcoming months. There will be a second surgery that should take place in October/November that will primarily be done to touch up the new ear. She said this surgery would be about 1/4th the time it took on the last surgery. However, she may want us to stay there for up to a week if needed during her recovery. As for now, we will let her heal and try to get ready for her jaw surgery in July. I would say we are half way home with her journey, but at least for now, all of us are home.


Monday, May 11, 2009

Day 9: Last Day of Disney


Wow..5 days of Disney is about the limit. I think we did almost everything Disney has to offer. It has been a good trip for Lauren. Today she would not rest until she saw Minnie again and gave her a flower she found. We mostly just went on any rides that Lauren wanted to do again. She also picked out some gifts for her brother and sister to give to them when we return tomorrow. We visit with Dr. Lewin tomorrow afternoon and then head to the airport. Dr. Lewin will be taking off the bandages and dressing. They will be able to wash Lauren's hair for the first time in a week. This will be the first opportunity to see her new ear. Well big ear. We tell her that her little ear grew. She asked us today how old Cameron was when his ears grew. They will then bandage her back up and place the protective cup back over the ear. Becky will fly back with her on the 20th of this month to have the bandage changed again as well as do another check of the ear and how it is healing. Dr. Lewin said that no further visits will be needed but she would like to have pictures sent each week to evaluate her progress. She says a picture is worth a thousands words to her. It looks like leaving comments on here is easier now. Sorry for the issues.

Sunday, May 10, 2009

Day 8: Open Comments Now Available


A few of you have mentioned it has been difficult to save comments. I have gone in and found some setting changes that should make that easier. Before I guess you had to register for a google account. Now, you should be able to add comments under anonymous or under name and it should work. We do appreciate the comments and support. Lauren I know appreciates it as well. Today we spent another day in Disney. One more day to go. I think we have done about everything. We saw all the parades they had to offer today. Lauren was intent on giving a flower to Minnie Mouse today, but we couldn't find Minnie to give it to her. We celebrated Mother's day the best we could for Becky. I think we missed out in the morning, but we think Disneyland gave out flowers to all Mother's that came into the park today. Becky was also greeting with a Happy Mother's Day from all the cast members in the park. She was a bit saddened that the other two kids weren't here to share it with her. However, she did get a phone call and talked to Cameron and Kara. To cheer her up, we went to dinner at the Cheesecake Factory. As Becky will admit, good food is one of the greatest gifts you can give her. Lauren is still doing very well. I think she is starting to slow down a bit, but so are we. We are anxious to get home soon.

Day 7: Lauren vs. Tower of Terror


The day was filled with Cotton Candy, Popcorn, Fireworks, and more rides. We even got Lauren to go on the Tower of Terror. She was not tall enough to go on a lot of the bigger rides last time we were here. We thought it may be too much for her, but she made it through unscathed. Any rides that throw her around side to side we worry a bit because we don't want her to hit her head. This ride was more up and down, so I think the concern was if she was going to be too scared to go on it rather than being in danger of hurting herself. She didn't scream or cry. She just closed her eyes and held onto us. If you ask her if she wants to go again, she says no. Just like her brother. But at least she can say she has been on a grown up ride. We are having a lot of fun but are missing home and the rest of the family. We can't wait to get home next week.

Friday, May 8, 2009

Day 6: Happiest Place on Earth


Our second day at Disneyland was spent trying to meet as many characters as possible. Lauren wanted to meet Minnie Mouse ever since she got here. She was very excited and antsy waiting in line to get her autograph and give her a hug. She is healing well. There is still some bleeding from the area where they took the skin graft and the stocking cap she has to wear makes her head itchy. Lauren is also a bit more swollen today than previously, but the doctor said that is normal. She doesn't complain though and she has gotten used to wearing it. Tomorrow should be another full day of adventure for her and us. We are going to California Adventure tomorrow and maybe back over to Disneyland in the evening for fireworks.

Thursday, May 7, 2009

Day 5: Half Way Home


Five days down, Five more to go. Today was pretty uneventful. In more ways than one. But overall, Lauren is doing fine. Not much to report. We took her to Disneyland today and had a good time. We went on all the rides she wanted to go on and we plan to do more tomorrow. I think she really misses not having her brother or sister there to share this with them. We were given what I like to call the "golden ticket". It allows us to go on any ride and not have to wait in the lines. They put us right on. It is fantastic. The best part of the day however, was during dinner. We were eating at a restaurant and Lauren saw that many kids there were playing with balloons. Well, this made her want one. We were seated by the exit and a family that was leaving walked past us. There was one young girl that was around seven years old that was carrying a balloon and she glanced over at Lauren and saw all the bandages she had over her head. She waved to Lauren and walked out with her family. A few seconds later, she came right back in the door and walked up to us and gave Lauren her balloon. I was stunned and didn't know what to say. We attempted to thank her and she ran back out the door. That was awesome to see and Lauren was very grateful.

Wednesday, May 6, 2009

Day 4: Back to the Doctor










Today we had our first check up after the surgery. Lauren has been doing well and has little pain. The only medication we have given her is antibiotics to make sure she does get an infection. The appointment today was to remove the two drains that were placed during the surgery. They we placed to help remove fluid underneath the new ear as it healed. We were told the removal of the drains would be painful, and it was. This was the first time we have seen Lauren cry throughout all of this. Although it was quick to slide them out, the area is very tender and I am sure it hurt. Once they were gone, the pain subsided quickly. The doctor was very happy with her progress so far and told us some things to look for until the next appointment. She has had very little swelling and any bruising she has had is on her back from laying on the operating table for so long.

The rest of the day we spent in Beverly Hills and Hollywood. We took pictures at the Hollywood Walk of Fame and at Graumann's Chinese Theater. We also bought a map that showed locations of all the star's homes and we drove past a few. It is hard to see them because of the trees and hedges surrounding them. Very interesting places though. We have returned to the hotel and plan to rest after our long day. Tomorrow we will try to go to Disneyland. Lauren is excited and we think it will be a great way to reward her for this whole trip. We are going to try and get a stroller for her so she won't have to exert herself too much by walking around the park. Our next doctor's appointment won't be until next Tuesday, which is the day we head back home. Not sure there will be much more to update with her progress until then. That should be the first day we get to see her new ear. The dressing will be changed again and we will finally get to wash her hair. In the meantime, she has a new stocking to wear over her head and it gives her a cute ponytail out of the top.

Tuesday, May 5, 2009

Day 3: The Day After




Lauren slept well through the night. We did give her some medication for the pain, but she hasn't needed any today. We have mostly rested today. We took her down to the pool to get her walking around a bit. We also ended up taking in a movie since she was wanting to go out and do something. She seems to get tired quickly so we came back to the hotel to rest. Tomorrow we will visit the doctor to have the drains removed.

Monday, May 4, 2009

Day 2: Surgery- 8 PM (Post Surgery)









We have made it back to the hotel. We were with Lauren in the recovery room for a little over an hour. She acted very much like she did after the first surgery. She was disoriented and didn't understand what was covering her head. She kept trying to pull off all the tubes and wires that were hooked to her. However, she didn't seem to cry or be in much pain. She slowly started to come around and we even got her to smile. She complained of her back hurting a bit but we think it was from laying down for such a long time in surgery. She has a big mesh stocking cap that goes over her head and down her neck. The face is the only thing cut out. I think she looks like a cute white tele-tubby.

She has a protective cup that covers the new ear so we haven't been able to see it. However, Dr. Lewin took some pictures and showed us in the waiting room. Her face looks a bit swollen and the Doctor says she may swell some more in the next couple of days. Again, she said the most difficult part of the surgery as finding thick enough skin to graft into place. She ended up taking the graft from the back side of her head. This shouldn't take too long to heal if it is anything like the last graft they took in for her surgery in January. She has two plastic tube drains that are placed under the skin and ear. We are to monitor the drainage and make sure there is constant suction. They don't expect there to be a lot of draining however. She will have to keep these drains in for 2 days and then they will be removed.

Just from the looks of her, I think she will be able to bounce back as quickly as she did with the first surgery. She hasn't asked for any pain medication yet other than children's Tylenol. Tomorrow we will rest her as much as she wants. Wednesday we will head back to the Doctor for her first check up. We probably won't be able to see the new ear until next week, but I have asked if the Doctor can give me some of the pictures she took today. Thank you everyone for checking in and leaving your comments. It made the time go by faster by having this outlet to utilize.

Day 2: Surgery- 4 PM Upates

The nurse just let us know they are closing and we should be able to see Lauren soon. We are excited to get her back to the hotel and get out of this waiting room. Overall things have gone well with the surgery.

Day 2: Surgery- 2 PM Upate

We hadn't heard anything in a while and we went down to the cafeteria to have lunch. The doctor called and gave us news. She said everything is going fine and the hardest part so far has been finding a skin area thick enough to use for a graft. It sounded like the Medpor framework is in place and they will spend the rest of the time putting everything together. She said Lauren has been doing very well and continues to be stable. I think we will be here for at least another 3 hours.

First Celebrity Sighting


I was joking when I said we would see a celebrity here. Especially since this seems to be a major hospital. But we have famed NFL/sports announcer Al Michaels sitting in the waiting room with us. All indications is he is here to see a new baby. Not sure if he is a new grandfather..more to come.

"Do you believe in miracles!?! Yes!!"

Day 2: Surgery- 11 AM Update

We just talked with the Nurse again and things are going well. They said they are working on harvesting the skin graft for the new ear. The doctor wasn't sure where she was going to take the skin until she got in there. Either it would be taken from her head, the backside of her other ear, or possibly from underneath her arm. Not much more to report.

Day 2: Surgery- 8 AM Update

We arrived at 6 AM and checked Lauren into the hospital. We didn't have much trouble finding it and traffic was light. I think we will be here all day. The hospital is much different than the one at Stanford. Here there is a lot more going on. They gave Lauren some medication to relax her before surgery. It worked very fast and she was loopy in a matter of minutes. They carried her off and sent us to the waiting room. We share the same waiting room for the maternity ward, so it is pretty busy. The nurse just called us to let us know that the intubation for anesthesia went smoothly and they will be starting the procedure soon. They will call us often with updates.

Sunday, May 3, 2009

Day 1: Medpor Surgery-California


We arrived early this morning in Long Beach, California. We had an early flight and had no trouble getting seats on standby. As soon as we landed we called Dr. Lewin to let her know we had arrived. She wanted to meet with us the day before the surgery. She met us at a local hotel in the area and went over the surgery and what to expect. She reviewed all the risks associated with the surgery and answered any last minute questions we had. It will be a long day tomorrow for her and us. The surgery is expected to last approximately 8 hours and we have to be at the hospital at 6 AM. I will be taking our laptop with us and I will be updating the blog with the latest news. We are very confident in Dr. Lewin and she leaves nothing to chance. She is very thorough and wants everything to be perfect. We really appreciate her skills and her compassion.

Afterwards, we went to have breakfast and hang out at the ocean in Manhattan Beach. Around noon, the weather started turning really warm. We had a good time and I think it was Lauren's first time playing in the water. We built sand castles, checked out the local aquarium, and just took in the sun.

Later in the afternoon, we checked into our room in Anaheim. The room is very nice and we got a great deal. Thanks Priceline!! We are very close to Disneyland and we hope that after a few days of recovery, we will be able to take Lauren to the "Happiest Place on Earth." We had a nice dinner at the Bubba Gump Shrimp restaurant and came back to hit the pool.

While we were soaking in the hot tub, I got a chance to watch just how strong Lauren has been in this journey so far. As we were in the hot tub, three younger girls came and sat down next to Lauren. They were all older than her but varied in ages. Because Lauren's hair was wet, the girls noticed her birth defect right away. They couldn't help to look. I didn't feel like they were being cruel, but rather they were just curious. What affected me the most was that Lauren didn't shy away or act insecure in any way. She just looked at them as if she was trying to say hello and be their friend. All I kept thinking about was after tomorrow, she wouldn't have to endure the casual looks or answer questions about her condition. She knows why she is here and she isn't afraid. If you ask her why we are here in California, she says that she is going to see the Doctor to make her little ear grow. Although she still has a ways to go, she has been a trooper through everything and I don't see her changing in the future.

Tuesday, April 21, 2009

Another audiogram and another trip on the horizon

We haven't posted in a while because there hasn't been much to say. Lauren has been doing very well in her recovery and is doing everything she was doing before the surgery. We have had three audiograms since the surgery. She has made huge improvements in her hearing. In the low frequency ranges, she has improved over 50%. However, she has declined in the high frequency ranges. We are not sure of the cause for the decrease but overall, the surgery was a success and it should make it so she will not have to any hearing device in the future.

In less than 2 weeks we will be traveling to California again for the Medpor surgery. This will be at the Cedar Sinai Medical Center in Beverly Hills. We will be there for a total of 10 days. The surgery will be on day 2 and the rest of the time will be for recovery and checkup visits. We may try to take her to Disneyland if she is up to it after the surgery. The doctor says many families will make the trip there. The hospital has given us a letter requesting for preferential treatment for her visit to Disneyland to make it as comfortable for her as possible. This may mean no lines for her and us. I know she would really enjoy going if she can. Although her brother and sister won't be there to share it with her. We thank everyone for their support and assistance in making this trip possible for her. This will be one of the bigger steps in her journey thus far.

Tuesday, March 17, 2009

Audiogram Results

On Friday, March 13th Lauren went in for her first audio gram testing since the surgery. She had one completed the day before her Atresia surgery in California. This recent test was conducted almost identically to the first test. They test her hearing on both sides and graph out the results. They use different frequency levels and then score them at what decibel level she was able to hear.

In the test, she is put into a sound proof room with an audio gram technician to instruct her what to do. Another technician will be outside and control the test. In the first exam she had, they started her out by having her repeat certain words. Then they played a game with her to see if she could hear different tone levels. She was told if she could hear the "birdie" noise, she was to throw a colored ball into a basket. After the first test, she scored at or below 15 decibels at all frequencies on her good side and was around 60-70 decibels on her other side. The goal of the surgery is to improve her hearing to at or below 30 decibels.

The results from the second test showed much improvement. In two particular frequency ranges she improved by 50%. She was at or close to the 30 decibel level. However, in the higher frequency ranges, she scored lower than before the surgery. This was a concern for us, but after speaking with the doctor in California, he felt it wasn't anything to be worried about. He would however like to test her hearing again in a month. Usually the next test wouldn't be until four months out, but he wants to make sure that the areas she decreased in are checked. He mentioned that she may still have some undissolved packing that could be behind her new ear drum as to why there was a decrease. Overall, he was encouraged that she made good improvements. So, the good news is she definitely has shown improvement and we are hopeful that with some additional healing, she will improve even more. As of now, all packing has been removed from the ear and we no longer have to use the ear drops with her. She has been doing very well and we are planning to the make the next trip to California the first week in May for her outer ear reconstruction.

Friday, February 27, 2009

One Month Update

Well it has been one month since Lauren's Atresia repair surgery and she is doing well. Today she had an appointment with her ear doctor Dr. Kelly. He removed the final bit of gel foam packing and the small plastic disc that was protecting her new ear drum. We will return in two weeks for an audiogram test to see how much improvement she has with her hearing. We are optimistic because of what she has said, but we will see.

About a week ago Lauren was fitted with an expander placed inside her mouth. It is a lot like an upper retainer you would wear after having braces removed. Although this is much bulkier than a retainer. Every day we have to put a small key into it to turn the gears and tighten it. The expander is supposed to help straighten her upper jaw so that when they go to distract the bottom jaw, it will be even. Because this device is so bulky, it makes it awkward for her. She has difficultly speaking and eating with it in, but she is starting to adjust. Unfortunately, she may have to wear this for up to 6 months. It all depends on how soon she progresses with it. We met with another doctor this week who could perform the lower jaw distraction. He recommended finishing up with her ear surgeries and then the distraction could be done. It is sounding more and more like the jaw might be the most difficult of the surgeries because it is working on her bones. It is undecided how long she will need distraction. It also is just a matter of how long it takes for her jaw and bite to be where they want it.

Other than that, we are working on making travel plans for the Medpor surgery in May to construct her outer ear. We will be having the surgery at the Cedar Sinai Hospital in Beverly Hills with Dr. Lewin. We were joking that we may see some celebrities at the hospital. They would be there for some touch up plastic surgery or Botox shots. We are seriously thinking about hitting Disneyland on our visit, but it all depends on how well Lauren feels after the surgery.

Tuesday, February 10, 2009

Ear Doctor Results

After the weekend we realized we should let everyone know what happened at the ear doctor on Friday. Everything went great. He removed the outer packing in her new canal and her skin graft bandage was removed. It is amazing at how fast the body heals. She has been amazing and SO patient. We are SO proud of her.

Today we took her to the orthodontic surgeon at Primary Children's Hospital to have her fitted for an upper palate expander. Her left lower jaw is slightly shorter than her right lower jaw. In July or August she will need jaw surgery. To prepare for this surgery her upper left jaw needs to be extended to prepare for the lengthening of her lower left jaw. This expander will help with this. It will be permanent for six months. It is not painful and almost looks like a retainer. She is excited that they will be making a special PINK one just for her.

Thanks to all of you for your continuous support and interest. We are lucky to have such great family and friends. We will continue to update everyone as things happen.

Tuesday, February 3, 2009

Home and Recovering

http://picasaweb.google.com/bottley30/Lauren?authkey=yY3wlnZOMwA#
(This link will show photos of Lauren pre and post op. Some pictures are graphic)

We are home and Lauren is doing great! It is so suprising at how little pain she has had. We are looking forward to seeing Dr. Kelly our local ear doctor to remove her bandage over her skin graft on Friday. He will also trim some of the packing inside her new canal.

She will say out of the blue throughout the day, I HEAR MY EAR. As the packing is slowly removed Dr. Roberson said it will just get louder. It is very exciting.

We are already starting to look at the next surgery scheduled May 5. This surgery will be outer ear reconstruction. Dr. Lewin in Los Angeles will be doing this procedure. Lauren is already excited to see the "girl doctor" that we met in October. So here we go again. We will continue to update everyone on how she is doing.

Wednesday, January 28, 2009

On Our Way Home


We are on our way home. We are very excited to get home and Lauren is happy to see her brother and sister again. (Wow, Lauren just now decided to open up one of the security doors here in the Long Beach Airport and set off the alarm. That was really loud!!) Anyway, we met with Dr. Roberson this morning to remove the bandages. She kept them on throughout the night and seemed to get used to having them on. Surprisingly, they didn't need to put any new bandages to replace them. We thought they may dress it with a smaller bandage, but they just leave it open. The area they took the skin graft from has a bandage stitched in place, but the ear canal is layered with all kinds of packing. The only thing we have to do is place a small piece of cotton ball in the canal and it stays in place. She has not needed any medication for pain all day and she is very energetic. She had no trouble with pressure changes on the flight from San Jose to Long Beach.

We mentioned to Dr. Roberson that she told us several times that she can hear out of her new ear. He said he wouldn't be surprised by it. Although, he said the surgery was quit tricky and her anatomy made it difficult, he was optimistic with the results. Last night, Lauren asked Becky to listen to her new ear. Becky put her ear up to hers and Lauren asked her is she could hear what she was hearing. We told this to Dr. Roberson and like us, I think he teared up a bit. You can tell he really enjoys working with kids and loves what he does. He is amazing. He gave us instructions on how to proceed with her medication and activities for the next few weeks. Next week we will see an E.N.T. doctor in Draper and he will remove the first layer of packing and also the skin graft bandage. Dr. Roberson says that the skin graft area could heal as quickly as one week. In the meantime, we are just to give her some antibiotics and make sure she keeps the new ear canal clean and dry.

Well we hope there are no troubles on the way home. We had some difficulty with our Standby fight out of San Jose. They seemed to have processed our names incorrectly, but they fixed it and we boarded just in time. I don't anticipate any problems from here on out. Hope to see all of you soon.

Tuesday, January 27, 2009

Surgery: Day Two Update (new hair do)


Lauren slept through the night and didn't take off her new bandage wrap. She is starting to get used to it now but it does slide down over her eyes from time to time. We started her on the antibiotics that was prescribed by the doctor. She doesn't seem like she has been in any pain today so we haven't had to give her any medication. The doctor just recommended normal Tylenol if she needed it. She is in good spirits but just a bit tired. Overall, she is doing better than we both thought she would be doing. She even mentioned to us today that she can hear out of her new ear. We are hopeful that is the case. It would still be limited especially with so many bandages and packing in her new ear canal. Either way, she says she can hear which makes the trip here worth it. Again, we won't know for sure until she has another audio-gram in a couple months.

Monday, January 26, 2009

Surgery: 5 PM Update (Bear & Lauren recovering fine)


I was hoping to post something earlier but I haven't been able to until now. At about 12:30, Dr. Roberson came and spoke with us. He said they were finished and told us she did very well. There was no complications during the surgery and he said it went as planned. We asked him specifically about the facial nerve and middle ear bones. The facial nerve, he said, was a non-issue. He said he never encountered the nerve during the surgery and it seemed it was far enough away from what they were doing to not cause a problem.


As for the middle ear bones, he said they were very deformed. As is the case in most Atresia patients. However, he said it was all in one piece and seemed to be very stable in it's connection. He also said it has good movement and he feels it should be able to function normally despite it's deformity. The placement of the ear drum and skin graft for the canal went very smoothly. Although he is unable to tell us for sure if she will be able to have improved hearing, he feels the chances are good that she may have good improvement. We won't know for sure until some time has passed. They won't test her hearing again for two months.


Lauren did so well before, during, and after the surgery. All the staff wanted to stop by and see the pretty red head they had been hearing about. She was pretty groggy coming out of the anesthesia. We had to sit with her for an hour before she was able to gain more consciousness. After that, she was awake enough for the hospital to discharge her. We drove back to the hotel and put her in bed. However, within thirty minutes, she pulled off the dressing and bandages around her head. We were told this had to stay on until Wednesday. Needless to say, we weren't ready to see her wounds just yet. We tried to put the bandages back in place but we were worried it wasn't correct. We called the doctor and told him what happened. He recommended us driving back over and they could wrap the bandages again. They did the re-wrap and we drove back to the hotel.


She is going to be pretty tired for the rest of the day into tomorrow, but she seems like she isn't in much pain. It has been a long day for all of us, so we will probably get to bed early tonight. Tomorrow is another recover day. I don't think we will go anywhere unless Lauren insists. We will be meeting with the Doctors on Wednesday and if everything checks out well, we will head for home in the afternoon. We hope this has helped keep everyone updated on her status and we thank all of you for checking it and to those that left supporting comments. Lauren especially thanks you.

Surgery: Waiting Room 12 PM Update









Lauren (40263) is still in the operating room and the update board hasn't changed. We have had the nurse call us twice to give us updates. Both were positive. The latest update they said they should be finishing up in another hour. Everything has gone as planned. The two concerns regarding the facial nerve and the middle ear bones have not been mentioned so we hope there hasn't been any problems there. We are assuming not. After the surgery, we will have to wait maybe another hour before we can see her.

Surgery: Waiting Room 10 AM Update


We are sitting here in the waiting room and there is not much to do so I thought I would type a quick post. We arrived early at 6:30 AM and checked in. At 7:30, they moved us into the Pre-Op room. Lauren changed into her gown and they did a quick check of her vitals (i.e. blood pressure, temperature, and heart rate). We met the nurses that will assist with the surgery as well as the anesthesiologist, Dr. Ort, and Dr. Roberson. Lauren was very cooperative and just enjoyed watching cartoons as they came in and out of the room. They gave her some medication to drink and said it would make her drowsy. Within about 10 minutes her eyes started to get heavy and you could tell she was a bit loopy. At this point the operating room was ready and they told us we had to leave back to the waiting room. After really struggling through the first few minutes, we have settled in now and have been waiting for about 1 1/2 hours. They said the surgery should be approximately 3 hours. They have a large flat screen TV in the waiting room that you can watch what stage of the surgery they are currently in. It is really a great way to keep everyone educated with patient statuses and you feel like you don't have to ask every nurse or doctor walking by for an update.

Friday, January 23, 2009

We're here in California















Well we made it to California and we are excited to be here. We arrived yesterday with little trouble. Our standby flight went perfectly and we checked into our hotel room. They were very helpful and gave us everything we requested. We are in Fremont, California. It is about 15 miles from the Stanford Ambulatory Surgical Center. We have to cross the bay into Palo Alto to get to the hospital, but it should not take too much time getting over the bridge.

After our travel yesterday, we spent today mostly relaxing. The only appointment we had today was at the California Ear Institute for a pre-op meeting. Before the meeting, we spent a lot of the day around Stanford University to find out exactly where the surgery will take place. The weather has been bad all day. It has been overcast and drizzling rain. The locals said it has been very dry and warm until this week. I guess we brought the Utah weather with us.

During our appointment an audiologist gave Lauren a hearing test. We have had a few tests done before, but not here. They tested different decibel levels for both ears to graph her scores. Her non-affected ear scored very well and this is where they set the bar for her in regards to her normal hearing range. The other side, as expected was lower, but the doctor was surprised at how well she scored. In terms of numbers, she scored as low as 5-10 decibels on the normal side and 40-50 decibels on the Atresia/Microtia side. They said her scores are considerably good for a child with atresia.

After the testing, a Dr. Ort examined Lauren briefly. He may be one of the doctors assisting Dr. Roberson on Monday. He proceeded to explain the surgery and answered any questions we had. He told us of all the risks associated with the procedure. Foretunately, most of them seemed so rare it really eased a lot of our concerns. The procedure he described was exactly as Dr. Roberson explained to us at the conference in October. In all, the surgery should last about 2 1/2 hours. We were told that we must be at the hospital at 6:30 AM PST on Monday. The surgery is scheduled at 8:30 AM. She is not to eat anything after midnight the day before the surgery.

The doctor said that as soon as she regains consciousness after the surgery, she can be released from the hospital. He also said she should not feel too poorly after the surgery. She will be heavily bandaged for the first couple of days, but on Wednesday, the large bandage will be removed and we will be released to come home. They are not concerned about her flying home and they feel it is actually better for her to fly home this week than to wait. The protective packing and gel foam that they will use to plug the new ear canal will protect her during the trip. She must keep this packing in the new canal for three weeks. Some of the packing will be removed a little each week, but it won't be fully removed until after about a month. We have planned to have an E.N.T. doctor locally removing the packing. He was recommended by another family that had their daughter complete this surgery not too long ago. We will have to give her antibiotic drops into the new ear canal to prevent infection and occasionally change some outer dressing.

It is unknown how soon after the surgery we will know if it improves her hearing. It could be immediate or it could be a couple of months. After the packing has been removed and some healing has taken place, they will retest her hearing again to see what the improvement will be. However, I think we may be able to recognize that ourselves. There are two things that can't be determined until the surgery and that is the location and proximity of the facial nerve and the condition of the middle ear bones. Dr. Roberson, after reviewing the CT scan, doesn't feel like the nerve will be difficult to work around. However, if he does get in there and finds it will be a problem, he will stop immediately and will not continue if there is a danger of damage. The other is the condition of the middle ear. The doctor today said that in all Atresia cases, the middle ear bones are not fully formed. This is one of the main reasons she would never have 100% hearing in that ear. During the surgery they isolate the middle ear and check to see it's condition. If it is in a good working order, they will leave it to work as it should. If it is poor condition they could remove it and replace it with a titanium implant.

The new canal will be formed behind her Microtia ear. They will take a graph from some muscle tissue near this same location to use as the new ear drum. The top layer of skin from the back of the scalp will be used to graph in place for the new canal. It will be about a 3 inch by 3 inch area. The doctor said she won't have to lose too much hair and the rest of her hair should cover the graph area. Since this graph is the top layer of skin, it will not contain hair cells so they can use it for the ear canal. The rest of the pre-op visit we signed forms, completed paperwork, and worked out the financials.

Overall, Lauren is in great spirits. I think she will do fine. We are optimistic that the news will be positive after the surgery. The goal is to improve her hearing under the 30 decibel range. If this is possible, she will not need any hearing device in the future. It will never be as good as the non-affected side, but it would allow her to hear and develop normally. The rest of the weekend we are going to try and do some sightseeing if the weather permits.

We really miss the rest of the family and hope the other kids are doing well. Lauren really misses them. They are not here to play with her so we find we have to fill in and we don't have the same energy that Cameron or Kara have. I plan to try and put updates on here daily. Especially right after the surgery. We thank all of you for your thoughts and prayers.