Brayden's Journey

Sunday, July 27, 2014

Stitches are out!

Can't believe it's been over 2 weeks since surgery and so far he is doing pretty good.  We are just worried about one area on his side that has been having some discharge.  We have started wet to dry dressing change again and hope it gets better soon and not split open.  Just when we think we are good, something has to happen. Since Brayden has been feeling good, hard to keep him from running around all the time. 

This past Thursday Brayden went out to our local hospital here in town and got his stitches taken out.  They put him under anesthesia which makes it easy to get his stitches out. When he got up, he got spoiled by the nurses and they gave him a goodie bag full of toys.

Now since the stitches are out, he still needs to wear an ace wrap for another week or so and were doing wet to dry dressing change 2 times a day.  We are hoping that area heals up quickly and no more dressing changes, they are never fun for Brayden. 

Having fun this weekend at Sac County Fair!
 Area that is having problems



Tuesday, July 15, 2014

Back home and the road of healing

Brayden Sunday morning before we left Chicago.  He did great on the 8 hr car ride home and surprisingly he only slept 30 min of the car drive.  He was busy playing on the ipad and watching movies. 
He was happy to be home again! Brayden has been doing great and hasn't been having any pain meds for the past few days.  I can't believe how fast he is recovering and running around like normal already.  Which is not a good thing when he is suppose to take it "easy" for 3 whole weeks. 
Last night to keep him from running around I took him and baby brother, Bentley on a bike ride.  They both love it!
We are doing dressing changes once a day now and every time we open it up, we are nervous what we might see.  So far this is our only problem area.  It's red where the stitches meet up.  We are praying his stitches hold together and we have no huge issues with healing like last round.  We are also changing his 3 drainage tubes every 4 hours for 10 days.  The other day when we were changing them, Brayden looked down and asked if that was apple juice inside the tube.  I told him no, it's blood honey.  He then started crying and told me he doesn't want to be sad anymore, he just wants to be happy.  I told him he's a brave boy and he doesn't need to cry and he can be happy.  Some of the things he says, just breaks my heart as a mom. 
Since surgery, every we pull down his undies or he goes pee and we lightly touch his pee pee, he screams bloody  murder.  We couldn't figure out why it hurts so bad.  So today I gave Dr. Bauer a call and he said that pin is caused from swelling in his pubic area from surgery.  He has lots of fluid around that area right now an it will start to go down each day and he will start to feel better.  I was glad that is all it is, but man is it painful for him. 

Friday, July 11, 2014

Surgery #10 a success and the AMAZING results!!!

We left for Chicago on Wednesday morning and arrived 5 pm.  Brayden did great in the 8 hour car ride and watched movies and took a nap.  This is the first surgery, Geoffrey and I both are going to be with Brayden

And were off!
 Brayden watching movies in the long car ride
 After we arrived at Ronald Mcdonald house, he wanted to play in the toy room
 Playing with toys!
 Surgery day and woke up a happy boy! Surgery at 11 am and had to be at hospital at 9:30 am
 Brayden and Grandpa and Grandma Vauble before leaving for the hospital
Funny faces before surgery
Playing with toys before surgery

Surgery lasted for 2 hours and Dr. Bauer said everything went as good as he thought it would.  He said we had enough good skin to stretch the way he wanted it to.  He got all the nevus off under his belly button and cleaned everything else up.   He did say we wouldn't need anymore expanders, which is AMAZING news to hear! Most likely he will just need a surgery later on to clean things up and to remove some of the satellite spots he has that are fairly large someday.  Brayden is suppose to take it easy for the next 3 weeks while he heals up.  We pray he heals up perfectly unlike last round.  We are changing his 3 drainage tubes every 4 hours now and doing dressing changes once a day. I am amazed how he is already up and walking today and for the most part back to his happy self again.  He did ask me today, Mommy no more bubbles and no more doctors.  I told him no and he smiled.  This little brave boy has been through so much these past 3 years and we are beyond happy we are at the end of the road for his nevus journey and that we started when he was so young.  Very thankful for Dr. Bauer and his amazing nurses that has helped him along the way. 

Had to have pizza after surgery
Results from surgery #10

Before any surgeries when he was a few days old







Sunday, July 6, 2014

Fill #11 and FINAL fill for this round....Surgery on Thursday

Wow, we made it a full round this time with minor problems.  Feel very blessed for this round so far going smooth for us.  Just the scar tissue gave us problems this round.  Tonight we only filled the stomach since the other 2 expanders are too close to that hole. 

As we were doing the fill tonight I told Brayden to look at me and not at daddy, as he's sticking the needle in his thigh.  Brayden asked me, "Why do you want me to look at you, Mommy? " I said because I don't want you to watch your daddy stick a needle in you because it will scare you.  He said, " It will make me cry if I see it and it does scare me." Oh such a brave boy and it breaks my heart the things he has to go through at such a young age.  But he is such a tough boy and I can't believe he will be having surgery #10 on Thursday.  Hard to believe we started this journey when he was 7 months old and now he is 3 1/2.  What a journey it has been for all of us. 

We leave Wednesday morning for Chicago with my parents, Geoffrey and I.  This will be the 1st surgery Geoffrey and I go together.  I am happy we are all going to be with Geoffrey and we are even staying a few extra days, to enjoy the city together.  We will be staying at the Ronald Mcdonald house downtown Chicago again.  Such a nice place to stay and a perfect location. 

We got 35 cc's in the stomach and now at 570 cc's and our goal was 500 cc's.  The left thigh is at 410 cc's and our goal was 350 cc's.  The left back is at 355 cc's and our goal was 500 cc's.  We are happy we are over our goal on 2 of the expanders.  Wish we could have reached goal on the back but didn't want to push our luck. 

Now that we have done everything in our power to make this round go well, it is up to Dr. Bauer and his special talent on Thursday to do the rest.  I am praying for good outcome and for him to health perfectly this time.  I don't want a repeat of last round with the healing.  That was one of the worst things we ever had to deal with.  Thank you everyone for keeping Brayden in your prayers.

Happy boys before the 4th of July parade.  After Brayden has his fills, it's amazing how you would never guess everything he has been through, such a brave boy!