Brayden's Journey

Monday, October 24, 2016

Brave Brayden and surgery #12

We weren't planning on this surgery but since we were coming to Chicago for surgery and staying at our favorite place....Ronald Mcdonald House, we asked our friends and family to help us out with tabs.  Brayden collected 45 pounds of tabs in 1 week! What an amazing support system he has, we are very thankful for everyone who is praying for this sweet brave boy! We are very proud of him and he has been through so much these first 5 years in his life.  Some of us have never had any surgeries and this brave boy....just had #12!! Thinking of that makes me realize how brave and special he really is!  

Here he is with his tabs before the weigh in at Ronald Mcdonald House 

 Our room and amazing view at Ronald Mcdonald House 

TV room they have for guest on every floor 
 One thing this little boy loves is we had to take him to Lego Land.....He loved it! 
 Look at that sweet smile, he had so much fun!

 Sunday was a perfect day to walk around the City, it was 70 out! We had to make a special trip to Build-A_Bear! For Brayden's 1st surgery he got a monkey from it was only fitting to get him another one.  He said it's so soft he will cuddle with it after surgery!

 Sorry Brayden, not going to get this! ha
 Walking around the city, had to take a picture by the horses
 Chocolate milk shake, his favorite! He loved getting free chocolate from Ghirardelli when we walked in
 Perfect evening to play on the roof top at Ronald Mcdonald House

 Play area at Ronald Mcdonald House, so fun!
 Night before surgery all snuggled up with his super hero

Had to be up by 4 am and be at Hospital at 6 was at 7:30 am.  So early for us. When we pulled up to the hospital Brayden started crying.  He said,"Mom I'm scared." Ugh this just broke my heart, not what I want to hear from my son.  I asked him why he was scared and he told me he didn't want it to hurt and he was afraid he was going to wake up during surgery and that he didn't want the mask on him because he could stop breathing.  I know one thing I am thankful we started surgeries when he was 7 months old and that he is still young.  I asked him if he remembered surgery before and he said he didn't.  I told him I would be with him until he falls asleep and when he wakes up and that Dr. Bauer will watch over him and he's in good hands.  We finally got him calmed down and got him distracted.  Once we got in we played a few games of bingo and he won! I told him his great grandma Pat and grandpa Fred loved bingo!

Once it was time to go back to the OR he started crying again and said he's still scared.  They gave him some medicine to relax him but it didn't fully kick in.  They remolded the hospital and he got his own DVD player and he got to watch a movie until he went back, which he loved!

Surgery lasted over 1.5 hours and Dr. Bauer said everything went great! He said Brayden had 3 areas that was not healing so he went in and cleaned them up, he also touched up his scar tissue on his back and sides.  He had 2 spots of some nevus that was still on his right leg from the previous surgery so he cleaned that up as well.  Brayden is suppose to take it easy for 3 weeks now, So hoping he does this so he can heal and not have any issues.

Mommy and my brave super hero before surgery.  His grandma Rhonda made him this cape for his 1st surgery and brought it with us to every surgery

Grandma Rhonda, so thankful to have her for support, we couldn't have done these surgeries without her 

We waited 2 hours for Bradyen to get up once he was done with surgery.  He was sleeping good, which was much needed after everything he went through.  When he got up he was happy to see mommy and Grandma! All the nurses remembered him and couldn't believe how big he is now.  Last time they seen him, he was 3.  We just love this hospital, his doctor and all the staff.  They really make coming here for surgery that much easier.  

The nurse said we could leave once he ate, went to the bathroom and got his pain under control.  So he watched a movie and he was happy and ready to leave! I didn't realize when I packed his outfit last week, it would match his new build-a-bear!

1:30 and we finally left the hospital.....1st stop, his favorite ( and mommy's) Target! Since he was such a brave boy, we had to go to the toy aisle! Then he said he was super hungry so we went out for lunch and he ate a grilled cheese and also as we were leaving he asked us to take a picture! What a happy brave boy!! 

 Since he was feeling so good, we went to the mall and walked around. Win, win....he got a nap and mommy and grandma shopped ;)

Bonus....checked into our hotel and they had free wine tasting and snacks tonight, they must have known we were coming tonight! Much needed after our day.

Brayden is doing good tonight, just not walking around yet.  He says his leg is sore.  His whole right leg and foot is wrapped, so he picked out some cool Star Wars slippers at Target today.  He had pain meds at 1 and didn't have them again till 7 tonight.  I am sure all of us will be sleeping good tonight! Tomorrow we go to Dr. Bauer's office at 9:30 and go and see our favorite nurses, Mim and Susan! 

Thank you everyone for praying for my brave boy and all the messages, texts and phone calls.  Means the world to us that so many people love and support my little boy.  I know he may not understand now why he has to go through all of this, but one day....I hope he appreciates everything his family did for him at such a young age.  We all love you Brayden and I'm so proud to be your mommy! 

Monday, October 10, 2016

Another surgery for Brave Brayden #12 here we come!

Can't believe it's been 2 years since Brayden's last surgery.  I am so thankful that we started him at such a young age.  Just when I thought I could print out my blog because I was done with it, he needs another surgery.  Since June Brayden's back hasn't healed, it's the same areas re-opening over and over again. Most days when he comes home from school his poor shirt has blood on it.

We have tried everything possible to help it heal like creams and wraps.  Well nothing is working so we reached out to Dr. Bauer and he said, he needs to come to Chicago for surgery sooner then later.  Dr. Bauer will clean up these areas, remove the deep sutures that is causing the secondary inflammation that is causing the continued breakdown of the skin.  Once he does this, we pray he heals and no more problems.  This will be an easy surgery for him compared to the others but still it's another surgery I was not wanting him to go through.  

I asked Brayden how would he like to go to Chicago and see Dr. Bauer and he could fix his back? He said that would be fun and he would also love to stay at the Ronald Mcdonald house! I am so happy he has good memories of Chicago and doesn't remember all the bad things.  He also asked if his little brother could stay behind so we could do some fun things without him! Ha.  I found a Legoland near Chicago and Brayden is so excited to go!  His birthday is coming up, so I thought this would be a perfect treat for him before surgery on Monday.  We are leaving on Friday, that way we can have a few fun days in the city before surgery. 

Here's a picture of his open wounds.  For awhile I couldn't figure out why he didn't like going to gym class, well then he told me they have to do sit ups and it hurts his back.  Now I can see why he didn't want to go.  He didn't like to tell us it was hurting him, that is the way he is.....he keeps things in.  I hope he learns to tell us if something is hurting so I can help solve the problem for him.  

Please keep my little guy in your prayers, he is such a strong brave boy and I am so lucky to be his mommy!