Brayden's Journey

Sunday, February 26, 2012

3rd fill at home done :)

Tonight we did Brayden's 3rd fill at home.  We were worried all week that the fill might not happen because on Wed we took him to the doctor and he had a ear infection and a sore throat.  Luckily the antibotic's have been working and he is feeling better.

Brayden was a brave boy tonight and both sides were numb.  Seems like the hard part is having him sit in his high chair for an hour while the numbing cream sets in. 

On the right side tonight we got 100 cc's! Which we were happy about and it was still a little soft. Now the right is at 350 cc.  The left is nothing like the right and the left has been tight from the start.  We only got 40 cc's in tonight and now the left is at 222 cc's.

Brayden enjoying Mickey Mouse and feeding himself Special K while the numbing cream kicks in

Happy boy, waiting for the fill to start

Brayden reading his new card he got in the mail from Syliva & Ineke, he loved it and kept wanting to hold the cute!
 Right at 350 cc and left at 222 cc

Sunday, February 19, 2012

2nd fill at home...done!

Tonight we did the 2nd fill at home.  My parents were here to help distract Brayden and he did a great job and didn't cry once. He didn't feel a thing, which was great!

We are still taking it easy this 1st couple of fills, we don't want to run in to any problems like last round.  We got 80cc on the right and 37 cc on the left.  Now he has 250 cc on the right and 182 on the left.

Right side at 250cc

Left side at 182 cc

Brayden got a suprise when he was done with his fill, he came to the backyard to find a playhouse that I use to play with when I was his age....he loves talking on the phone

In the play house...been over a hour now and doesn't want to leave it

Sunday, February 12, 2012

1st fill done with round #2

We just finished 1st fill tonight and we didn't know how Brayden would be since he's older this time around.  So we turned on Mickey Mouse and gave him a sucker and he was good to go :)

Both sides were numb which was great and we were told to take it easy on the 1st fill since he will be carrying these expanders around for the next 11 weeks.  We got 60 cc in the right, now the right is at 170 cc and we got 35 cc on the left, now the left is at 145 cc. 

Yummy eating a sucker and some fruit snacks

Brayden being such a good boy, didn't cry once

My brave little boy!
 Right at 170 cc and left at 145 cc

Friday, February 10, 2012

Tubes out & pictures from Chicago

Wed night we removed Brayden's right tube.  We decided that we would remove them our selves since Brayden had such a bad experience last time with his doctor when she removed them.  She has never done it before, so she really didn't know what she was doing.  All you have to do it cut the thread that is holding the tube in place and then gently pull out the tube.

Brayden did pretty good sitting still while Geoffrey pulled it out.  He was much happier that the right tube was out, we got to take it out early because it stopped draining and no more fluid was coming out. The left side still was draining, so we have to wait till day 10 which is Sunday to remove that one. Well that wasn't the case, the past 2 nights Brayden has not been sleeping and he has been so uncomfortable and he kept rubbing his back where the left tube was. 

So last night at midnight, we decided we would remove it.  After we did, he was happier and he slept much better then the night before. So this morning Grandma will give him his 1st bath since surgery.  We will do his 1st fill on Sunday as long as he stays healthy, he is getting a runny nose, but I am telling myself it's from teething and not a I will be crossing my fingers it's nothing so we can do our 1st fill at home.

 Brayden playing with his blocks at the hotel the night before surgery

Brayden & I on surgery day waiting for Dr. Bauer

Brayden with Grandpa Mike & Grandma Rhonda 

Brayden & Grandma Rhonda with the blanket the nurse gave him 

Brayden in his super hero cape...he is such a strong little boy, makes me so proud to be his mommy!

Even a super hero needs alittle Mickey Mouse in before he gets put under ;) 

 Brayden a few hours after surgery, recovering in his hospital room

My sweet brave little boy 

He had to have both his pacifiers with him at all times after surgery 

Aww what a happy boy, or he was on some drugs here ;) 

Yay....time to leave this place & go to Iowa! 

Mim & Brayden.....he has two expanders in above his neuvs each expander is 750 cc's 

The right & left expander each have 110 cc's of saline that Dr. Bauer put in during surgery. You can also see his drain tubes that are coming out

Wednesday, February 8, 2012

Round #3....done!

Last Wednesday  Brayden & I flew to Chicago and my parents met us at the airport. Brayden was great on the 3.5 hr plane ride to Chicago, with all his flying he has done lately, he is becoming a pro ;) Soon as we flew in, we got some yummy Chicago pizza and headed back to the hotel room for the night.  Even Brayden loved the pizza :)

Bright and early on Thursday morning, we were off to Highland Park Hospital at 6 am....Brayden was Dr. Bauer's 1st surgery for the day.  When we got to the hospital they sent us to a room to change Brayden into his hospital gown. Then the nurse came in with a stuff animal and a blanket for sweet  of them to do that! When it was time to hand Brayden off to the nurse, he was full of smiles which made the hand off much easier on mommy and Grandma this time around.

Brayden's surgery lasted about 1.5 hours. Dr. Bauer said that surgery went great and he placed two 750 cc expanders in his middle back.  He started us out with 110 cc's in each expander...which is great! Then it was time for mom & grandma to go back to recovery to see Brayden.  The nurse was rocking him when we walked in and she asked me, are you sure you don't need to go to the restroom? I can hold him for awhile longer. She said she loves Brayden and she remembered him from before and she didn't want to put him down. 

Brayden drank some formula as I rocked him, which he hasn't had a bottle since he was 12 months old.  He has been on whole milk, but he didn't want his sippy cup, so I was just happy he was drinking something even though it was formula in a bottle.

As we were in recovery, the nurses were telling my mom and I how amazing and caring Dr. Bauer is.  I have to agree, he is such an amazing doctor and we are so lucky that we found him to treat Brayden.  They were also telling us that Dr. Bauer is an artist and also designs jewelry.  I would love to see his work! He has such a creative side to him and he is so talented in what he does.

When it was time for the nurse to wheel Brayden & I to his room, 2 of the nurses were fighting and shoved each other, they were fighting over who would push us to his room.  I thought that was so sweet that they both loved Brayden so much. I was of course cracking up at them.

Brayden ate a little that day, he had some banana and also some gold fish....but for the most part all he wanted was formula. Don't know how many times we watched Mickey Mouse that day, he loves Mickey and he also wouldn't put down his 2 pacifiers all day. Had one in his mouth and the other one in his hand all day long. Brayden did pretty good the 1st night in the hospital, he slept from 10 pm till 5 am.....he was on pain meds every 4 hours, so that helped him with the pain.

That night my mom & I stayed in the hospital with Brayden. Dad went back to the hotel for the night. Brayden was a bed hog and I cuddled with him all night and mom had a cot to sleep on. Friday morning we got discharged at 9 am and we went to Dr. Bauer's office to see Mim before the long 7 hour drive back to Iowa. 

Mim did his 1st dressing change and we got to see the expanders, they looked good for only being 1 day out from surgery. We drove back to Iowa on Friday and we stayed till Tuesday.  It was nice to spend time with family & friends. Brayden had a great time playing with his cousin Makenna.  He is suppose to take it easy for 2 weeks, but tell that to a 15 month old, easier said then done.

On Sunday we will do our 1st fill for this round at home.  Luckily my parents will be in town for 2 weeks, so they can help us distract Brayden while we do the fills. 

Brayden is doing great now, he is getting off the pain meds and eating like normal again.  Which is great....tonight we will remove one of the tubes since it's no longer draining and we will leave the other tube in to drain till Sunday.  Then on Sunday the tube will come out and no more dressing changes. 

Thank you everyone for the prayers and for the support, having all the support makes this process so much easier on all of us.  Everyday Brayden amazes me with his strength and courage that he has. I can't believe everything he has been through so far in only 15 months of his life, but he has proved to all of us that he is a tough little boy and he can outcome anything.  I know this has made me stronger and I will continue to stay strong for my little super hero :)