Brayden's Journey

Sunday, April 27, 2014

One fill down

Brayden took the first part of this week taking it easy and laying around.  Then he had his buddy Marc, Beckem and Riley come over to cheer him up and what do you know, it worked and he was up and playing with them.  Amazing how friends can cheer you up. 

Marc and Brayden
 Riley, Beckem and Riley

Last night we removed his drainage tubes and that wasn't easy.  He was screaming an crying the whole time.  But once they were out, that meant no more dressing changes which he was happy about. That meant this morning he had his first bath after 10 long days.

He did say this morning that I have bubbles and they are under my skin mommy.  The older he gets the more aware he is of everything going on now.  Which is harder on all of us. When Geoffrey got out all the supplies for the fill tonight we asked him if he wanted to make his bubbles bigger and he started crying and saying no big bubbles :( 

Tonight my mom and Brandon helped us with the fill and dad took Bentley upstairs so he didn't have to see or hear what was going on.  Poor Brayden was crying so much and his leg was shaking so much.  Breaks our hearts to see him so scared.  He kept telling us that doctor said no more.  One hard thing about having 3 expanders, means putting needle in him 3 times.  And it didn't help that 2 of the ports where we stick the needle is on his front thigh, so he kept looking at Geoffrey when he was trying to get the needle in.  Told him to stop looking and focus on us.  Very proud of my brave boy and everything he has to go though. 

We are off to a good start we got 60 cc's in his stomach and 40 cc's in his left back and 30 cc's in his left thigh. 

Left back is at 115 cc which is a 500 cc expander and left thigh is at 70 cc with a 350 cc expander
 Stomach is at 170 cc out of a 500 cc expander

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.