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

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.

 

 

Good news....Brayden's back is finally healed!

After 5 1/2 LONG months, Brayden's back is finally healed! We are so happy he is healed and no more dressing changes. These past 5 1/2 months have been a long one for our family.  Seeing Brayden be in so much pain when we started the dressing changes, just broke my heart.  But with every dressing change, Brayden showed us how brave he really is.  He is such an amazing brave little boy and I am very proud to be his mom. 

We were suppose to have surgery in a few weeks, but since his back just now healed, Dr. Bauer would like to wait for a few months before we go back.  On a good note, he won't be needing any more expanders and just going to clean up the scarring on the back and cutting out the rest of the remaining nevus. 

This weekend was Brayden's 3rd birthday! Hard to believe he's 3 already, but what an amazing boy he has become.  He has been through so much his first 3 years of life, that most people never have to go through.  So nice to see him run around and be like any other 3 year old and not having to worry about dressing changes and expanders.  Now we just have to keep the scar moist and wait until his next surgery.  We are hoping he only needs one more surgery and then we will be done with our nevus journey of surgeries.

Also we still have cookbooks for sale, they make wonderful Christmas gifts. Let me know if you would like to buy one, they are $20 or donation.

 

 



 

 Happy 3rd birthday Brayden!

 

Start of his bad back

2 week after surgery, hole getting bigger

 

One month after surgery starting to look better and shrink down

5 1/2 months after surgery, finally healed!

 

 

7th laser surgery and updated pictures of healing

Today we had an early morning and had to be at Phoenix Children's hospital at 6 am.  My mom and I took Brayden for his 7th laser surgery and also to get his stitches removed.  I was so happy that Dr. Price could do both of them at the same time. Brayden was in a pretty good mood this morning, especially after they gave him a "happy drug" to calm him.

This is a picture before laser surgery, now the spots are super dark and will start to lighten over the next few weeks

My brave boy before surgery

 Brayden with Grandma Vauble

 Playing with some toys before surgery

 Brayden after the "happy drug" kicked in wearing his super hero cape

My mom and I took him back to the OR and stayed with him until he was put under, which is never fun seeing you child like that.  But I knew he was in good hands with Dr. Price.

It took just over an hour and she said everything went well and you can see that the laser has been working on his satellite spots. The satellite spots are much lighter now and you can tell a difference each time we get the laser done.  She also got out all but 2 of his stitches.  She couldn't get to the last 2 because they were so embedded in the skin.  So we are hoping over time they will come out. 

She also recommended that we put pool salt and bleach in his bath tub.  The pool salt will take away the sting when he gets in the water.  He hates taking baths right now and screams every time he has to get in it.  I can understand why with a big open wound. So we are hoping soon, he will love bath time again!

Brayden's back is continuing to heal, it is looking better and will still be a few months before it's fully healed. We have been putting a steroid cream and a dry pad and ace wrap on it twice a day.  All we can do is take one day at a time.  But it looks like we will be doing dressing changes for awhile longer. We are very happy the worse is behind us and that we are seeing improvements.

Let the healing continue

Since last week on Friday, we have been doing wet to dry dressing changes 3 times a day to get the rest of the dark scab off.  It has not been a fun week for the 3 of us, very draining and Brayden hasn't been himself.  He normally sleeps 10-12 hrs a night and he has been sleeping terrible, crying on and off all night.  It hurts him to sit or walk, so he hasn't been doing much other then moving from one part of the couch to another for the past 2 weeks.

Brayden also hates taking a bath right now, can't blame him with his butt looking the way it does. He hates the dressing changes and screams bloody murder every time.  It's so hard to see him this way, but in order for him to heal, we have to keep up with the dressing changes each day.  We are very thankful for our friends this week, coming over and helping us with the dressing changes.  It is impossible to do it alone since he moves around so much.

On Friday, Brayden finally walked from his room to the living room, that is the first he has wanted to walk in over 2 weeks.  Happy to see him slowly bouncing back.  He just amazes me with his strength throughout all of this.  In the mean time, I am trying not to stress too much, I want his baby brother to stay in till his due date.  Just 2 weeks away now! My mom was suppose to fly out June 7th, but with Brayden needed so much attention and I'm suppose to take it easy, she is flying here today to help us.  We are very excited to have her come out here to help us. Times like this, we wish we lived closer to family, but we have realized most of our friends are only a phone call away to help us, which is amazing!

I emailed Dr. Bauer pictures of Brayden on Friday and he said that it's amazing how fast the healthy granulation tissue ( red stuff) has come in.  He wants us to scrub off the rest of the dead scab with a semi dry wash cloth.  ( Easier said, then done). And also to start using Hydrocortisone and over the counter steroid cream on the healthy red area.  The area with the scab, we still have to do wet to dry dressing until it comes off.  If we can't get the last of the scab to come off this week, we will have Dr. Price do it when he is put under on June 4th when she takes his stitches out and laser surgery. We have to continue having Brayden wear the ace wrap because this will help the granulation tissue from getting to thick.  Soon we will start to see some shrinkage of the wounds as well.  Slowly we are heading in the right track and each day he is starting to look better.  Going to be a few months before he is fully healed. 

Brayden's next surgery is up in the air, I have it tentative scheduled for Nov 21st, but now with him healing like this, it is up in the air.  I am hoping it will be enough time for him to heal.  Guess we will see how things go over the next few months.

Brayden had a good day yesterday, no pain meds for the first time since surgery and he actually walked around and played with his toys.  So happy to see him bouncing back and playing again.

Here is a picture from last night, everyday it is looking better

    

Healing is getting worse before it will get better

This has not been a fun weekend for any of us.  Brayden still won't walk or sit yet.  All he has been doing is laying on the couch.  On Friday, I sent Dr. Bauer pictures of Brayden and he wanted us to start wet to dry dressing changes 3 times a day.  He said even though it looks awful right now this is not something that will get infected, it will just continue to look awful for awhile.  As soon as the rest of the dead dark scab loosens it will fall off,  Once it separates the surface will gradually get pinker, then the giant hold will starts to shrink down and start to heal.

The dressing changes have been horrible, Brayden gets so scared and every time he peeps and poops because he is shaking and scared to death.  I can see why he is this way, he has a giant hole on his butt.  That wouldn't feel good for any of us.  By doing the dressing changes 3 times a day, it will help heal this area.  This morning, I did the dressing change alone and it was not easy.  But I knew I don't have a choice and I had to get it done.  I just HATE seeing my son so scared and also in so much pain. 

So many people have reached out to us this week and praying for Brayden, it means the world to us that he has so many people that care about him.  This is not an easy time for the 3 of us and times like this, having no family around has been hard. We are trying to stay strong for Brayden and we know it will get better, we just have a long road of recovery ahead of us.

I had a few nevus mom's reach out to me and they have been in our shoes before and the skin did heal for there kids, it just took time.  So that is always nice hearing other people can relate to what were going through. 

Yesterday I went to Target and got Brayden Spiderman DVD and little Spiderman toy, he was so happy and first thing he asked for this morning was Spiderman.  Glad throughout all of this, he can still have a smile on his face.  Sure makes these hard days, a little easier on all of us. 

Here is a picture from today, I know it looks horrible and my heart just breaks for my son, really wish he didn't have to go through this.  But he is such a brave strong boy, I know he will get through this. I am so proud to be his mommy!

When will we see the light at the end of the tunnel? Brayden's back keeps looking worse

Brayden has been having a rough week, everyday his back is looking worse.  Also last night we took his drainage tubes out.  It was probably one of the worse things we have every experienced as parents.  Brayden was crying to much, shaking, sweat dripping down because he was so scared.  He also pooped twice while we were trying to take them out because he was scared.  I just hated seeing him that way and I wish I could take his place in a heart beat.

On a good note, after the tubes came out, he was his same happy little self again. He's still not walking yet or wanting to move around.  Which is good. We don't want him moving around too much.  He hasn't been sleeping good, he cries off and on at night because he is so uncomfortable.  But tonight he had his first bath since surgery and I'm sure that made him feel a little better.

Brayden was suppose to get his stitches out next week, but since it's not healing correctly, we pushed it back till June 4th.  He will also be getting around round of laser done since he will already be put under. 

We have been in contact with Dr. Bauer everyday and his nurses and sending them pictures. They say all we can do is stay on top of his dressing changes and we pray it starts looking better soon