How we made this surgical experience also a vacation

With having to stay in CA for 2 weeks after the surgery and it only taking Trey 3 days to feel good enough to start being his active 3 year old self, we had to do things to keep the boys busy and mom and dad sane. The 2 days after surgery Trey just watched movies, he hardly ate anything and slept without having to work any energy out. Day 3 came and he started to not want to watch movies and ate normally. We found that the Santa Monica 3rd Street Promenade a great place to take him to walk around. They have bushes shaped like Dinosaurs which he loved, it was a great way to let him run around but when he was tired he rode in the stroller with his brother. Santa Monica also has a really nice farmers market on Wednesdays near the promenade. We also took the boys to the Petersen Automotive Museum in Beverly Hills, close to Cedars. Great place for boys since it is just full of interesting cars. We also visited the La Brea tar pits in LA, just down the street from the automotive museum. The park is free but you do have to pay to visit the museum. It was also a good place to let an adventurous boy run around without to much risk of hurting his new big ear. We also spent 3 days at Disneyland. We did not go 3 days in a row but rather every other day and made sure the weather was good since Trey can not get his ear wet yet. By the time we went, Trey had all the energy in the world for an all day visit. We were able to go on many many rides that he loved. We also got a pass at Disneyland that allowed us faster access to the rides so we did not have to wait in long lines, if you plan to go after surgery get this pass at city hall in Disneyland. We have also found local parks where we can walk to and let them both run and kick a ball around. All fun and not as dangerous for the ear as letting him bounce off the walls and furniture at the apartment. My goal was to have him have lots of fun memories about getting his bigger ear. I am hoping we accomplished that goal but only Trey and time will tell us. As for me I will always remember this trip as a great thing that Trey got his bigger ear and a wonderful family trip to Disneyland that also included our first earthquake. Aaron wasn't as excited about the earthquake since he lived in CA before and has felt many.

pictures from Dr. Lewin of Trey's new Big Ear

Just some pictures that Dr. Lewin took during surgery. You can see the new big ear with all the skin grafts, Trey's bunny bear keeping watch for mommy and daddy and Trey with the anesthesiologist who was really great with him. Trey is doing really good, almost 100%, I would say the only difference is he doesn't have as much energy as usual but getting to have a little to much for our comfort. He also woke up a few times last night looking for his daddy even though daddy was sleeping in the bed next to Trey's bed. We all took a walk to the local farmers market to keep him busy without risking hitting his head, unfortunately I think Daddy and Mommy got worn out and not the kids. But life is starting to feel a little normal but I do have some anxiety that he is going to bump his ear before it's healed. We get the first dressing change on Monday and then we start to learn how we have to care for it while it heals.

picture of Dr. Lewin with Trey

Just before surgery we got a picture of Dr. Lewin with Trey. Trey is playing with the syringes that had is Versed. He drank it like it tasted good which surprised the nurses. Dr. Lewin is amazing with kids, Trey kept asking to leave the pre op area until she arrived and before the versed when he became really relaxed. I Only wished they gave us parents some of those calming meds too. Oh and for the sentimental part, it was the last pictures of his little ear. Can't wait to start up with pictures of his 2 bigger ears.

Day 1 after surgery

Trey is doing really well, better then I expected. He is tired, has had some pain last night but easily controlled with the pain meds they gave us. He hasn't asked for pain meds since this morning so that is a great sign. He so far has not touched his cap and drains which we were nervous about. Thankfully though the drains will be removed on Friday. He has been watching movies since 4am and is still not steady on his feet but over all no pain or discomfort just recovering from anesthesia. As you can see in the picture he is watching his videos but you can also see he is wearing a cap and 2 drains are coming out. His left arm he has a bandage where they took the full thickness skin graft. His other ear also has sponge in the back because they took a skin graft from behind it and replaced the skin with graft from his arm.

TREY IS OUT OF SURGERY AND HOME

We are finally home, Trey is really sleepy, not really with us and we expect that for a few more hours but he may also sleep through the night. In regards to the ear the pictures we saw look great and we can't wait to see it for ourselves. It was technically more difficult for Dr. Lewin but she said she was able to do what she wanted just took piecing his skin on his ear like a puzzle. Now we just have to keep him from grabbing at his hat, he did that as he was waking up but I am hoping he knows it has to stay on for long time. Let the healing begin.

Dr. Lewin update number 2

Dr. Lewin called at 3:45pm which is so nice to actually get to talk to her rather then the nurse. She wanted to make sure we knew that everything was okay but it was taking longer then expected. His hemifacial microsomia made placement of the ear difficult but she is happy with how its turning out. She got a large membrane flap that was so big it also filled in his cheek which is better then fat injections. She unfortunately could not use his little bit of ear cartilage to create a tragus because an artery was directly below it so it was safer to remove it completely then to move it. He also got a face lift. Yes that is correct my 3 year old had a face lift in Beverly Hills, CA. Sometimes you just have to laugh at these things. So we are looking at 12 hours of surgery for Trey today. I expected 8-10 but I know he is in good hands. Actually Dr. Reinish her partner and creator of the medpor ear reconstruction said the ear looks good. Not sure how he saw it since he was in surgery during the same time but then again you just assume he would check on her. I do know she tends to take longer with her surgeries then Dr. R but he has had more years of practice but I like to think that she is that more of a perfectionist.

Dr. Lewin calls from OR

I LOVE Dr. Lewin. She called from the OR, its about 11:30, the surgery started at 7ish. She said he is doing great, that she was a little nervous about his facial nerve but it wasn't an issue which is excellent to hear. She said everything is going well that Trey is doing his part with good anatomy. She said the stressful part for her is over and now its about putting him back together. Okay not the phrase any parent wants to hear but I was able to joke about it with the doctor. I love Dr. Lewin. At least he is half way done. Now if I could finally stomach some food I might start to feel better.

BIG DAY TREY GETS HIS BIG EAR

We arrived at the outpatient surgical center at Cedars an early 6am this morning with a very sleepy little boy. He was a trouper and only started to get nervous was when they called us to go back to the pre op area like a cattle herd of people and it the pre op room was set up for well for the nurses but scary for a 3 year old. Our pre op nurse didn't have the greatest gift of working with kids but after they gave him Versed with made him very loopy he seemed to not care, well enough he seemed happy but still refused to take off his shoes and put on the hospital pajamas. Dr. Lewin was great, Trey really liked her and he was happy to see her again. She was happy to have her favorite anesthesiologist today which is always a good thing to hear. The anesthesiologist was great with Trey, she carried him to the OR since he wouldn't lay down on the bed and gave him cookies that he could hold until after the surgery. Of course I assume he won't be holding it the whole time but to him he will be. We bought a new bunnybear, Trey's favorite teddy bear that he chews on and has eaten the ear off of each one of them. Yes we have 3 because we have to wash them all time because it just smells. They will give it to him with a bandage on it like him and then he will see his bunnybear will get a new bigger ear as well. It was one of the few things we could do for him. It was really hard to kiss him goodbye but I know it will be worth it in the end for him. We will be waiting during the surgery in the waiting room that isn't really set up for long waits but at least I have company of parents whose son is going through the same surgery as Trey. Unfortunately for them it is not the first time through this but we are hoping both boys now will have wonderful outcomes.

Our Choice: Medpor

So after going to the Let Them Hear Foundation annual Microtia/Atresia Conference in October we have decided to go with ear reconstruction using medpor implant. We met with Dr. Brent, Dr. Reinisch and Dr. Lewin. All doctors are passionate about what they do. In the end my husband and I agree that we both felt medpor was the route we wanted to go and to go with Dr. Lewin since she accepts insurance. So the next question was when. I knew we can do it at age 3 but Aaron wanted to wait until 4, no real reason why but just thought we can wait. I spoke to Dr. Lewin on the phone for a half hour and asked lots of questions. She was so wonderful to talk to and assured me that 3 or 4 did not matter but that the earlier they do the surgery the kids just seem to bounce back faster and complain of less pain. She also mentioned that there are surgical advantages in doing it younger. Next thing we knew Trey's surgery was scheduled for March 23rd, just 2 weeks after his 3rd birthday. She was booked up until June and we wanted to try and get the second stage surgery in on the same calendar year and doing it in March versus June gives us that. Just saves us lots of money since our insurance is (I am hoping) going to cover it and one surgery will get us to our out of pocket maximum so the second surgery shouldn't cost us except for travel expenses.

So we are off to Cedars Sinai in March, we will have to stay in town for over 2 weeks due to follow up appointments. The surgery is expected to be 8-10 hours long but is an out patient surgery so he will come home that day. Pain should be minimal from what we are told, usually from the skin graft sites which will be behind the good ear and either from the scalp or groin area. Our hope is that it be a positive experience for Trey so he won't have anxiety over future surgeries for his jaw ( we expect 1-2 jaw distractions) So our plan is to go to Disneyland a week after the surgery. From what I have heard from others who have already done this journey is that it is possible. So that is the plan.

Right now I am doing my best not to think about the surgery and how Trey will look different the moment he is done. I hope he always knows that we feel he is perfect as he is and the surgery is not about "fixing" anything but we know that most likely one day having a small ear will probably bother him and that one day he will need glasses and living in AZ he needs to wear sunglasses. Straps don't work well for him to keep sunglasses on. Those are just a few of our many reasons to do the surgery and we right now can only hope for the best. Right now we have him talking about going to Disneyland after he gets his bigger ear. YEAH for Disneyland.