Brayden's Journey

Saturday, May 25, 2013

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


Sunday, May 19, 2013

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!

Friday, May 17, 2013

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

Sunday, May 12, 2013

Let the long process of healing begin

Luckily Brayden has been feeling better each day and yesterday he even wanted to walk for the first time, he's still a little off balance but he was determined to play with his trains at his train table.  He couldn't  stand for long and then he is ready to lay on his couch again.  He's suppose to be taking it easy for a few weeks, so I am fine with him laying down most of the day so he can fully recover.

Brayden lower back however, isn't healing the way we wanted it to.  Part of the skin is now peeling.  When we did a dressing change the other night, I couldn't even look at it right away, it was so painful for me to see and my eyes just filled up with tears.  Just so hard seeing it and knowing we had a great round of fills with these expanders and surgery was a success and now, we have the stress of healing. Not something we wanted for Brayden that's for sure. 

We sent pictures to Dr. Bauer and this is what he said, "Well this is certainly not what we would like to see, but does show the effects of the thinning of the flap.  The most critical part of saving as much skin as possible is keeping the flaps moist, covered and protected.  Aquaphor, xeroform, and the ace wrap and be patient."

So that is what were doing now, we are keeping that area clean and doing a dressing change once a day.  On a good note, Brayden is laughing, talking and eating like normal.  Which is great to see, just wish we could fast forward this time and he was healed.

Here's a picture of his back, it's not pretty to look at that's for sure

Friday, May 10, 2013

Sucessful surgery #8! And before and after pictures!!

Brayden & Geoffrey flew to Chicago on Monday morning.  Brayden was so excited when he got to the airport, he LOVES airplanes.  Luckily they had a direct flight to Milwaukee airport and Grandma Vauble was picking them up.  We are very greatful for my family  being so close that they can drive to Chicago for surgery so were not alone. 

Here is Brayden before the flight
Brayden happy to be in the hotel room, after they had yummy Chicago pizza for dinner

 Last bath for 10 days
Brayden had to be at the hospital at 6 am for surgery, when he got to the hospital he said, "toys." And he wanted to play, then he looked around the room and he realized where he was and he started crying.  Soon after he was distracted with he ipad and was in a good mood again. Brayden also had a good time before surgery doing animal noises.  When Geoffrey handed him off, he didn't even cry.
When Dr. Bauer came in to see Brayden before surgery and he said he looks terrific and the flap on the lower right we were worried about didn't need to move far so we will be fine.  He told Geoffrey we did great this round with our fills.  He also said if we didn't put the tegoderm tape on that area, it would have turned into a hole because that skin was wearing out.
Right before the anesthesiologist came into the OR, Brayden started coughing and he coughed up black texture that looked like ground coffee.  Then he coughed a few more times and it was clear.  They called a pediatrician back to come check Brayden out before surgery and he checked out just fine.  Dr. Bauer said that could be an ulcer due to all the stress. 
 Surgery took over 2.5 hours and Dr. Bauer was finished he called back Geoffrey & my mom and my mom called me so I could listen to what Dr. Bauer was saying.  Brayden had surgery on my birthday and the only thing I wanted for my birthday was good results from surgery and Dr. Bauer telling us that Brayden doesn't need any more expanders.  Then I heard him say those words and I just started crying.  I couldn't believe what I was hearing! Finally we are getting close to the end of Brayden's nevus journey! We were looking forward to this day since we started his surgeries at 7 months old.

Dr. Bauer said he was happy with surgery and everything went well.  He said Brayden would need another surgery to get the remaining nevus left but he can finish up without the expanders. He still has a little nevus along his butt and also up front and a few satellite spots that we want him to remove. Geoffrey and I don't mind another surgery, just as long as we don't have to get any more expanders.  This last round was very hard on Brayden.  He's at the age where he is so aware of everything.  We are so thankful we started him at such a young age.

Geoffrey said when Dr. Bauer told him the news that he didn't know whether to pick Dr Bauer up and bear hug him or give him a hard high 5 but I settled with a firm handshake and a side hug. He is such a humble man and I guess the best way to thank him is to wait till Brayden is older enough to give him a hug and say thank you himself, I'm sure that will mean a lot.

We will be having Brayden's next surgery later on this year.  This surgery will be much easier since he won't be getting any expanders.

Geoffrey went back to see Brayden and recovery and he was in recovery for 2.5 hours before they switched to a room for the night
Brayden was pretty uncomfortable after surgery and was happy sleeping and watching shows on the ipad. 

He did enjoy some picture that night and a few bites of a banana and rice crispy treat
That night Brayden slept pretty good, he went to sleep at 9 pm and slept till 8 am.  The next morning they got Brayden some breakfast but he didn't want anything. Then they were off to Dr. Bauer's office to see his nurses, Mim & Susan for his 1st dressing change. We were all very excited to see these results!
Brayden before at a few days old
 Before few weeks old
 Before few weeks old
Before surgery #7 when he got 3 expanders in
 Before surgery #7 before 3 expanders in
Expanders at full size before surgery #8
After surgery #8! Pretty much nevus free!!!
Look at these AMAZING results!

 Wow! Looking great!
Susan  said, "That Brayden tolerate the dressing change so well for all he's been though.  The lower right back area will require extra attention with moisture since it was the area that was a little more stressed from expansion, therefore, a little more fragile.....the reason for the color and vascular changes.  With some tender care, all should be well and she can't believe how far he's come."
After they left Dr. Bauers office, they headed to the hotel room for the rest of the day.  Brayden didn't want to be moved.  He was fine as long as he stayed in one spot and stayed up top of his pain meds. He didn't eat much the day after surgery. That night he slept 12 hours and woke up the next morning in a good mood!
Geoffrey and Brayden flew out that night and Brayden slept the first 2.5 hours of the flight and the last 30 minutes he was pretty fussy and ready to be off the airplane.  He was excited to be home last night and the only thing he wanted for dinner was ice cream and this morning for breakfast I asked him what he wanted and he said ice cream please. How could I say no to that?!
Brayden still has a long road of recovery ahead of him, that dark area about the butt, part of it is peeling and it looks so raw and painful.  It was very hard for me to see it for the 1st time last night, but just amazes me how strong and brave my little boy is.  We will be doing dressing changes the next 10 days and also changing his 3 drainage tubes.  Susan said to keep the dark area moist with lots of aquaphor, so that's what we have been doing. 
Brayden will have his stitches taken out and also another round of laser surgery on May 21st. Until then, Brayden will be taking it easy so nothing tears and so he can heal. 
My brave boy, only 3 days after surgery and he wanted to sit in his high chair and full of smiles!

Thank you everyone for your love and support this week, Brayden is one lucky boy to have so many people who have been praying for him.  We are just so happy that we are getting close now to the end of his nevus journey and the best thing, Brayden won't remember most of this.  We are so thankful we started at such a young age, it hasn't been easy on us parents but as a parent we wanted the best for our son and I am happy at how far we have come. We still have cookbooks to sell, if anyone wants one or knows where I can sell them, please let me know.  We would love to sell all of them before his next surgery.  Thank you everyone who has already bought one and supported Brayden.


Saturday, May 4, 2013

Fill #10....Final fill for this round!!!

We had a pretty busy week, which we were happy about, that way surgery will be here before we know it.  Brayden's spot we were worried about on the lower right expander is holding up and doesn't look any worse.  He also hasn't been coughing this week, so it looks like he just has allergies.  Which is an easy fix. Thank goodness!

Tonight we did fill happy we had a almost perfect round and we got to this fill! Erin came over to help with the fill again, so thankful to have her!  Brayden did pretty good and didn't cry too much during the fill.  Even though we had to stop filling on the right expander, we are still very HAPPY with our numbers we got this round.  We even went over our goal amount on 2 expanders! Tonight we got 50 cc's in the left expander and 50 cc's in the leg expander.

Total numbers for right expander 900 cc's and our goal was 1000 cc's
 Total number for leg expander is 580 cc's and our goal was 500 cc's
 Looks at those HUGE bubbles! What a brave boy Brayden is!
 Total number for left expander is 815 cc's and our goal was 750 cc's
We are happy we didn't have any infections this round or hospital visits.  Now that the fills are over with, we have to pray for Brayden's upcoming surgery on Tuesday.  We are excited to hand Brayden over to Dr. Bauer and have him do his magic and see the results.  We know he will be in good hands on Tuesday.  Geoffrey will be flying to Chicago with Brayden on Monday morning and my mom will meet them at the airport.  I am sad I can't be with them, but since it's getting close to me due date, I am not allowed to fly.  Tuesday is also my birthday, so I will be sad I can't be with my boys.  All I want for my birthday this year is a successful surgery and it would be the BEST present ever, if Dr. Bauer told us, no more expanders.  But we are trying not to get our hopes up, we will find out Tuesday.  We are just happy we did the best we could this round and praying for amazing results.  All I know, my baby is 1 step closer to being nevus free.
Please keep Brayden in your prayers next week and thank you everyone for the support through out this whole process.  It means the world to Geoffrey and I that so many people support our son.