Brayden's Journey

Sunday, April 20, 2014

Surgery #9

Super hero Brayden just had surgery #9 on Thursday.  Hard to believe it has been almost a year since his last one.  We needed the extra time for this skin to fully heal.  We are praying we have a better round then last and no complications this time.  Brayden got new insurance this year and we were fighting with insurance to get his surgery approved in time.  Thank goodness for my mom, she was on the phone with the insurance company and got it approved 30min before we were going to leave town.  If surgery didn't get approved we would have had to wait another 2 months for surgery.  Brayden is healthy are we are ready to start this round already.  So happy it worked out for us. 

My mom and I took Brayden to surgery this time, it took us 8 hours to drive from Sac City  We arrived Wed night at 9 pm and surgery was Thursday morning at 11 am.  Brayden did great in the car, but kept asking, "Where we going mom and are we there yet?" And his last meal before surgery he wanted pizza and donuts!


Morning before surgery


When we got to the hospital Thursday morning, Brayden told me I want to go home.  I think after 9 surgeries the poor guy knew what was happening.  He was pretty fussy until they gave him his "happy juice." Once he got that, he was telling me all sorts of funny things.  He was so hungry and when Dr. Bauer came to see him, he asked him, Did you bring me pizza with meatballs?  Dr. Bauer said he could have pizza after his surgery

Highland Park Hospital where Brayden has all his surgeries

 
Mommy &Grandma with brave Brayden before surgery
Surgery Hero Brayden
 
 

 Before surgery
While we were waiting for surgery, Geoffrey's godmother from South Africa came to visit us at the hospital.  What a special treat to see Fiona and catch up with her. 
Surgery lasted an hour and Dr. Bauer said it went well. He put in 3 expanders.  One in his stomach with is a 500 and Dr. Bauer put in 110 cc of saline.  He got one in his left back which is another 500 expander and he put in 75 cc of saline and his 3rd expander is in his left thigh and that is a 350 expander with 40 cc's of saline in right now.  We will wait till next Sunday before we do our first weekly fill.  




Rocking Brayden in recovery, took him awhile to wake up
 
 Brayden and his favorite recovery nurse Uni, she is the sweetest nurse and every time she remembers us

 
 Brayden not feeling the best, few hours after surgery
 My brave boy and I, love him!
Brayden was happy, he got his pizza with meatballs after surgery
 Brayden drinking out of Superman water bottle from his buddy Beckem

Few hours after Brayden ate pizza, he said is tummy hurt.  I wasn't sure if he was going to get sick or it was hurting from the expander on his belly.  Well 30 minutes later he threw up all over.  This is why we stay the night at the hospital the night after surgery, so much easier to have the nurses help out with Brayden.  He slept pretty good that night as long as you don't move him, he's happy. 
 
The next morning we left the hospital and went to Dr. Bauer's office to see Mim and do a dressing change.  That was not easy, he was shaking and crying the whole time.  He's so sore and raw right now.  After we left his office we went to one of our favorite places to eat, Lou Malnatis for Chicago style pizza. Poor Brayden just slept the whole time.
 
After we ate we went to the Ronald Mcdonald house downtown Chicago.  Wow, what a nice place that is! We are very lucky we got to stay for a night.  Everyone is super nice and it's in the perfect location. Brayden even got to pick out a new toy in a toy room when we checked in.
 
Brayden playing with his new toys
 Our room, on the 15th floor

 They even gave us a 31 bag and a blanket
 Bathroom, so nice!
After we checked in, we put Brayden in the stroller and walked downtown.  Then we even walked to the Navy Pier for dinner.  Brayden didn't eat all day and hardly drank anything, all he wanted to do was sleep.  That night he slept through the night. I just made sure I stayed on top of his pain meds.
 
The next morning we checked out and headed back to Iowa.  It was a long car ride for Brayden and he is still very sore.  He cried for over an hour and saying that he hurt and just wants to go home.  Last night when we did the dressing change, he was screaming and shaking so bad.  I know this round of doing the fills, will not be fun. Poor guy, breaks my heart to see him so scared. 
 
This morning the Easter bunny came, but since Brayden can't walk yet, Geoffrey carried him around to find the eggs. Brayden is happy if he's laying on the couch but doesn't like to move because it hurts him.  These first few days are the worst and I know he will feel better each day. Thank you everyone for your prayers and thinking of all of us during this time.


 
 




3 comments:

  1. Hello, Brayden’s mom
    Nice to meet you.
    My name is Hyekyoung Ha from South Korea. (Sorry for my poor English writing.)
    You may be surprised by my comments from South Korea.
    The reason why I write you is that I was so touched by your post in your blog.
    I have a lovely 4 year old son, Yesung, with Giant Congenital Melanocytic Nevus.
    Since many online contents in South Korea has very limited information or story for the giant nevus, I have tried to search for information even written by foreign countries, and I found Nevus Outreach website.Through the site, I fortunately had a chance to visit your blog and have read your son, Brayden’s story.
    When I first read your post I was surprised becuase i realized thtat there is someone who has same experience as me in other country.
    My son was born with birth mark which covers almost 80% of his body, so he had to get 5th surgery since 2 weeks after his birth and is still having laser treatment surgery every 3 month.
    Yesung’s surgery wound and scars from continuous surgeries were not easily healed, so I had to care him with big concern every day.
    From your post ‘but I knew I don't have a choice and I had to get it done. I just hate seeing my son in so much pain’, I could really emphathize with you.
    But thankfully Brayden and Yesung both endured tough surgery journey.They are brave little guys.

    Brayden’s mom!(can you let me know your name? )
    I started to wirte my son’s story in my blog recently.
    whenever I read your stories in your blog I think that they would help korean parents to feel they are not alone.

    So if you don’t mind I want to translate and summarize a part of your post in korean, and of course,I will show where it comes from your blog.(I will put the address of you website)

    http://blog.naver.com/onyou033

    If you do mind it. I will stop right now.
    I look forward to your reply.

    Best Regards
    hyekyoung Ha from South Korea




    ReplyDelete
  2. Hyekyoung Ha
    Sorry for my late reply to your message,i tried to read your blog but how do I translate it into English?

    Thank you

    ReplyDelete
  3. It’s great to know that he’s doing so well after those surgeries. It seems like in spite of all the stress that the surgery brought him, he still managed to stay tough and brave all the way through. How is he doing now? I hope things are a lot better. Anyway, thank you so much for sharing this story with us. All the best!


    Jason Hayes @ DECORM

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