The support Brennan has received is overwhelming and incredibly humbling. There is a growing number of people who are asking us how they can help Brennan through his journey and our main focus and priority continues to be prayer for Brennan, his overall health and for the doctors. But so many people are wanting to help even more. For those that feel led to help Brennan financially, a "donate" button is now available. It is linked directly to a special account for Brennan and his long road ahead. Any amount is greatly appreciated. I wish there were words to express our gratitude for all of the support and prayers B is receiving. Thank you to all and God Bless.
"Taming a wild animal"...ha ha ha... but that's what I feel like lately. B has SO much pent up energy and I feel so bad stopping him every time he starts to run, jump... I feel like I have to hold his hand everywhere we go and follow him around the house, keeping my eye on him. I turn around for one second and he's leaping onto the couch or trying to do a somersault. So, I've been trying to keep him occupied with other things...
Trips to the store... where he is contained in the shopping cart (B found a friend, there was no way this was coming home with us)
Doing floor puzzles
Going on lots of walks, where he is contained in the stroller
Feeding the ducks!
And lets not forget about our lil Pnut. We missed our sweet lil girl while we were gone. It's so great to be a family of 4 again! She's our lil princess...
It's really hard not letting a 3 1/2 year old boy run, jump, twirl around, skip, ride a bike, go to the park... but we are doing our best to distract him with other things. We have been doing lots of crafts, games, reading books, watching shows, doing puzzles... It's so sad because about 3 weeks before surgery he started doing somersaults, which he was actually getting really good at. He's been a trooper though. I can't wait until the day we take him to the park and say "Go Brennan... have at it!"
I've been wrapping his head at night so I can sleep better at night :) Technically, it makes me worry less about B grabbing at his ear or itching his skin graft site while sleeping. It seems to be working so far. He is doing so good with that too. He just sits there while I wrap it and knows it will come off first thing in the morning.
A question that we are getting that is most common: Can he hear better?
Well, we won't know the exact results until 5 more weeks. Right now he still has a bunch of packing in it that might be blocking sound in his ear. He will have a hearing test in 5 weeks to determine how his left ear responds to sounds. We are very excited to find out! However, we are noticing B responding to certain sounds more now than he did before, which is really cool!!!
Thanks for your prayers as the recovery stage continues!
We are home!!! We had the post-op appt. today with Dr. Roberson. It was great to see him and have him look at Brennan's ear. It was reassuring to have him say that it looked great. Joel and I were a bit concerned about it. It oozes out some gunk at night (sorry for the details) and we weren't sure if that was okay. I have been taping gauze around Brennan's head at night so he can't itch it and Dr. Roberson said that was fine and I can keep doing it. Brennan still can't run or jump around for 2-3 more weeks and shouldn't even go on a swing or merry-go-round. So, I guess it's more games, puzzles, dvd's, books, crafts... We also can't get his ear wet for a minimum of 8 weeks. That makes bath time interesting. I've got to email some families who have been through this before and see what creative things they have done to bathe their kids. We will be going back up north in 2 weeks for another appt. for Dr. Roberson to remove some of the packing in the ear. We will just be driving up for the appt. and then driving home. I believe we have another appt. 2 weeks after that and then one more 2 weeks later. At around 6 weeks B will have a hearing test to determine the results of the surgery. He will then have another one a couple weeks after that to confirm more results. We are very excited for those tests! As for maintenance, we have drops we have to put on the packing in his ear 2x a day. That's it until the next appt. Then I believe we will be putting some sort of cream in his ear as well.
Waiting for the doctor... with his monkey of course (B got to pick out a toy in the basket, this time he picked out a horse on a stick :)
Our lil guy and Dr. Roberson!
This was cool!!!... Dr. Roberson had to trim some of the packing in B's ear and Brennan started to cry, so Dr. Roberson said he would show B what he was going to do on his monkey... so cute!
2 Graphic Pictures (showing his ear 5 days post op)....
The skin graft site (on the right) should heal completely in 2 weeks. the gauze stitch was taken out today so the gauze should be coming off on it's own in the next couple days. Then it will look like a scab and heal all on it's own. The hair will come back too... it's amazing!
The ear tape was taken off and the red packing was trimmed. You can kind of see some of the skin graft that was attatched to the new canal. At our next visit the doctor will take out some of the red packing. Isn't it amazing... a new ear canal!!!
It was our last full day here on our "special trip" with Brennan. I put it in quotes because that is what we have been calling it for such a long time prior to the trip. We have been preparing B for his special mommy and daddy trip. He knew he was going on a "special trip" to see a doctor who would help him hear better, and of course to get to do some fun things with mommy and daddy and get some new toys. Today it didn't rain! We went to the San Francisco Zoo. B sat in the stroller most of the time because he can't run around or jump around, doctors orders. We had a fun time and for some reason B was into the frogs... of all the cool amazing animals, he wanted to see frogs. :) After the zoo we went to Fisherman's Wharf again. This time we could take our time and walk around without dodging the rain. We then went to the Golden Gate Bridge to walk around and take some pictures. By then, it was time to get back and start packing. I can't believe we are leaving tomorrow. I can't believe the surgery we had researched for so long, thought long and hard about, prayed about, talked about... has come and gone. We will find out tomorrow at the post-op appt. more about the after care and recovery process. I just can't wait until B is allowed to run and jump around. It's hard keeping that boy still :)
Today was a low key day. It was raining so we spent some time at a local mall. B is now back to his crazy, energetic self and it's hard to keep him from running and jumping around. I'm trying really hard not to be the paranoid mom, but when he has an open wound on his head that seems so vulnerable to me, it's hard to relax.
Here he is enjoying the tractor ride... slow moving, no jerkey movements :)
***The highlight of my day*** We are a part of a Microtia/Atresia group on Yahoo and Facebook. We met a family through the 2 groups who live in Canada. Their little girl, Amisha, had her 4th surgery for her new ear (rib graft method). The surgery was in the same area where we are staying. They are here for 3 weeks and it just so happens that Brennan's surgery and Amisha's surgery were on the same day. Well, we were able to meet up for dinner!!! It was so great to meet this wonderful family in person!
Amisha and Brennan
Amisha and I
Amisha's mom, Veena, and I
Sheri and her daughter, Veena and I
(Sheri is an amazing woman who worked for CEI and the Dr. who did Brennan's surgery. She has helped so many families with information about Microtia/Atresia insurance issues and surgical procedures... It was so great to meet up with Sheri too!) I felt so much more at ease talking with her. She even gave me a great tip for Brennan at night. I haven't slept much at all because Brennan keeps reaching up and scratching his ear and skin graft site in his sleep. She told me I can use guaze and cover the sight with it and wrap it in place. We are trying it tonight and I think I'll be able to get more sleep... less worrying :)
Tomorrow, weather permitting, we're off to the zoo.
I should start by saying that B slept 12 1/2 hours last night! He asked for water 3 times and I had to move him a couple times because he kept turning over to his left side. I didn't sleep that well because I was "monitoring" him. Occasionally, in his sleep he would reach up and scratch at his ear or his head and I would have to stop him. I hate that it can't be covered anymore and it seems like an "open wound" but I guess it has to air out to heal.
Today it was raining all day and we can't get his ear wet at all... so it was a little stressful. We decided to go to a science museum (lots of people, also stressful making sure his ear/head didn't get bumped...so we didn't stay long), Golden Gate Bridge, Lunch at the Hard Rock Cafe on Pier 39, and the Aquarium of the Bay.
We did a lot of driving and B was in his stroller a lot. The 2 best scenarios right now are B in his car seat and in the stroller because he is sitting still and can't bump his head on anything. We are in "recovery mode" right now but still want to make the trip fun for him at the same time.
Drums of course!!!! Having fun at the museum
Here we are on the bridge :)
If it wasn't raining, we would have walked it
At the Aquarium
A kiss from my lil man
The tunnel exhibit was his favorite part. It was pretty cool to have the fish swimming over us.
He didn't even want to pose for a picture, he was so busy pointing at all the sealife
Here he goes... time to smile for the camera :)
Here comes the sting ray...
This was pretty cool!
He surprised me by touching the sting ray! (I didn't even want too)
I learned a lot about bravery today. I learned it from my 3 yr old. It was a very special and meaningful day as it was time to take Brennan's head bandage off that was put on yesterday following surgery. This would expose the surgery site and tell the story of what happened when he was behind the operating room doors. We were anxious and a little hesitant but knew it needed to be done. While the bandage was on he had a hard time as it was very "itchy" and uncomfortable so it's safe to say that he was very excited to get it off. We were given careful instructions on how to take it off and we were to wait 24 hrs.
The time came near to have it taken off and we didn't feel comfortable doing it ourselves. We didn't know what we were going find and it would make us feel better if we had someone close by who had done it before and what the site should look like after everything was removed. We made a call to CEI and they fit us in immediately (amazing). When we arrived there they took us in and we were met with two CEI staff and one of the doctors. It was important to Brennan to have his monkey's bandage off as well plus it helped for him to see his monkey have it removed first.
Once B's monkey was done it was his turn. They started cutting the bandage off and Brennan's grin turned to a smile. You could see the relief in his face but it quickly changed when the gauze over his skin graft was removed. Some of the gauze was stuck because the wound was still fresh and it took an extra "tug" by the doctor for it to come off. Brennan wasn't ready for this and the pain associated with the extra tug surprised him. He cried and had a hard time for about 10 minutes which wasn't fun for us. The doctor also mentioned that the site of the skin graft probably stung like a rug burn after being exposed to air for the first time since it was bandaged 24 hrs earlier. In other words, I would have cried too, ouch. Needless to say we were very glad that we had CEI staff with us when this was done. It took some time but Brennan got used to the exposure and we went on with our day of driving around the area and resting.
Monkey got to go first :) Brennan's turn. He was so brave. Didn't resist at all. Gettin closer All in all he did a great job and we are so proud of him. He has been so flexible and adapted so well to some new rules and changes. We remind him often when he gets a little too rowdy and he responds, "Ok mommy/daddy". He had no idea at this point what was under that bandage. He probably couldn't remember the day before if you asked him. We eventually got to show him pictures and he was pretty surprised but after the explanation he smiled and carried on as if nothing had happened. You could see in his eyes that he is anxious for it to heal just as we are.
After talking at length we decided it was important to not only show pictures of B's new ear canal but also describe in as much detail as possible what each picture is showing. Simply put, we don't want to draw any extra attention to his ear just as we didn't before surgery. This won't change but we would be happy to answer any questions people may have. These pictures aren't for show and honestly not easy to post. They show our son in a very vulnerable and scary situation. But at the same time, we are thrilled and blessed that he was able to have this surgery. We hope these pictures help you in how you can pray for Brennan. He has a long road of a healthy recovery ahead and these pictures show that. It is also important for us to show these pictures to families who will be going through the exact same procedure in the future with the same doctor. We were blessed to be able to see similar pictures from other children who had undergone the same surgery and they more than prepared us for what B sustained in surgery. We sincerely hope these pictures help those families prepare for a very difficult decision they have to make for their child. So here we go. You knew this was coming....
WARNING: GRAPHIC PHOTOS TO FOLLOW.....
This picture was taken immediately after the bandage was taken off. Starting from the left side of the picture you see:
-Brennan's "little ear"- They had to take some of it off in the back to create his ear canal.
-The red "sponge" to the left of the bloody tape and behind his little ear is the tip of the plug that is inside Brennan's new ear canal. It is there to keep the canal from closing and will be there for a while. This plug helps prevent the canal from closing. The size of the new canal is about the size of a quarter. It is expected to get smaller (hopefully not too small) as it heals which explains why they make it so big to begin with.
-The bloody tape is in place over the incision where they cut to expose the bone and the drill site. The tape is also covering a part of the plug described above.
-The large piece of gauze behind his ear with fresh blood underneath is covering the site of the skin graft. It has been sutured in place as evidenced by the suture seen in the middle. The skin graft was taken to line the inner lining of the canal that was created. All of the skin taken was used to line the canal. Believe it or not this heals the quickest but can be the most painful during recovery. They obviously had to shave his head for this to be done effectively.
-You may be asking why there is a band-aid underneath this gauze. When his bandage was taken off and he went through quite a bit of pain he pleaded for a band-aid. This is where Kim put it and believe it or not it helped B calm down quite a bit. So this is an emotional band-aid, and it worked.
Another view from further out. Here is a close up of the outside of B's new ear canal. This was taken several hours after the first two pictures above and you can already see how the blood from the gauze is darkening (healing). You can still see the word "yes" from surgery below his ear to make sure the correct ear was worked on. In a few days the "plug" will be trimmed to be flush with the hole to avoid it snagging. It CANNOT come out for obvious reasons.
I think this captures B's bravery. He held so still for the picture. He's my hero. This picture shows some of the skin graft that wasn't covered by the gauze. It hurts me just looking at it.
Another view from the back showing more of the skin graft. Yes it grows back and so does the hair. I know, amazing.
So that's it. That's our boy.
Atresia repair after one day with many days to come. It's not pretty but it's a part of the process for our little guy and his journey to better hearing. We hope this shows a clear picture of what families can expect for Atresia repair and shows our friends and family how they can pray for this brave little guy. We hope anyone with any questions comes forward and asks. We don't believe in dumb questions. They can be asked in person or in the comments section. We want anyone who is going to go through this to be as prepared as possible. We hope this helps. God Bless.