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

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.

 

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 #10....so 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.

9th fill done & we reached our goals on 2 expanders tonight!!!

This week started off great, Brayden went to his pre-surgery doctor appointment and got cleared for sugery! He even met his new peditrician we want to take him and his baby brother too and Geoffrey and Brayden both really liked him.  Friday morning Brayden woke up with a cough,ugh.  The stress starts.  So off to the doctor he went.  Dr. said his lungs, ears and throat look ok.  He said as long as he is eating, playing like normal and all he has is a little cough, he's sure it's allergies.  So now Brayden is taking allergery medicine and that seems to be helping. 

For the past few weeks we have noticed Brayden's right expander was a little red on the bottom.  But it didn't look that bad, so we continued to fill it. On Friday I sent an email to Dr. Bauer and he said to stop filling that expander and to keep an eye on it.  Ugh, just what we didn't want to hear.  We are at 900 cc's on the right expander and our goal was 1000 cc's.  We were so close to reaching our goal.  But at the same time, we need to play it safe and don't want to risk loosing that skin we stretched.   Saturday morning when Brayden got up, I noticed it looked worse, it had a small dark spot in it.  Either it is a blood vessel or a hole starting.  So I put tegoderm which is like a band aide on that area to hold it in place.  When I emailed Dr. Bauer a picture of it, he said, "The last expansion just over stressed the blood supple to the flap.  As long as we keep the tegoderm in place it should be fine until surgery.  Try to keep his clothes from rubbing and no more filling that epander." So now we pray that that area doesn't get any worse over the next 8 days.

The area with the blood vessel or hole is at the bottom right expander

 

 

On a happy note, we reached our goals for 2 expanders tonight! Brayden cried during the fill again tonight, so we are happy next week is our last fill. I just hope he sleeps better tonight then he did last Sunday night.  Last Sunday night he cried from 8 pm till 2 am because he was so uncomfortable. Tonight so far he is doing a little better.

 

We are so happy the left side and leg expanders, we haven't had any problems with them this round.  Here we thought the leg expander would be our problem but it was the largest expander on the right. We got 85 cc's on the left expander and 40 cc's on the leg expander tonight. When Brayden was at the dr this week, they weighed him. His expanders weigh 5 lbs! Now wonder he's so uncomfortable at times.

 

We still have 1 fill left, we will do the final fill on Saturday night.  That way it gives the skin a few days to stretch before surgery.  Over all we are happy with the way this round is going, we just pray for good results during surgery.  If everything goes ok, this could be the last round of expanders for Brayden.  In 8 days we will find out! I pray it's the last round and we don't have to put him through this anymore.

 

Look at those huge bubbles! My brave boy! So proud of him

 

Left expander at 765 cc's and our goal was 750 cc's!

 

Leg expander at 530 cc's and our goal was 500 cc's!

 

 

 

 

Fill #8

Tonight we did fill #8.  Can't believe we are getting so close to being done with this round. Brayden's expanders are getting big and uncomfortable for him.  Last Sunday night, he tossed and turned and cried all night and Monday night he cried for 3 hours off and on.  I told Dr. Bauers office about this and the only thing they said we could give him is Tylenol, Motrin or benadryl.  On a good note we are just about 2 weeks away from surgery and so far we are doing great with our numbers.  Just wish he wasn't so uncomfortable at night.

This week he got to see his best friend, his nevus buddy....Josh! These boys haven't seen each other since February because they both had surgery and had to heal up.  They were both excited to see each other and it's so fun to watch them play together.

 

The past few weeks, Brayden has put up a good fight during the fill and tonight he did much better.  He cried but not as much and he also didn't move around as much.  But right after the fill, he is so uncomfortable and keeps touching his expanders and can't seem to get comfortable.  He has been crying for 2 hours now, none stop.  I have a feeling this will be another night of no sleep for all of us.  Hate seeing him this way, nothing I can do to make him feel better. 

 

 

We had another great fill with our numbers this week! And if we have another good one next week, we should be meeting our goals! We still have 2 fills left! We got 110 cc's in the right, 85 cc's in the left and 70 cc's in the leg expander.

 

 

Right expander at 900 cc's and our goal is 1000 cc's

 



 



Left expander at 680 cc's and our goal is 750 cc's

 

Leg exander at 490 cc's and our goal is 500 cc's

 

 

Fill #7 tonight

Tonight was fill #7, so happy we made it to another fill with no problems. Only 3 more fills to go and surgery is 3 weeks away! Erin and Brent came over tonight to help us with the fill and also Geoffrey's co-worked David wanted to see the process. 

This week, I asked other nevus mom's if they had any tips to keep Brayden calm during the fill and they said get him a new toy right before the fill.  So that's what I did, I got him a monster car and another tip they said that worked was to show him a video of another nevus child during the fill that is calm.  So Brayden's bff nevus buddy, Josh did a video for him.  I showed it to him yesterday and he was all excited to see Josh.  So I was thinking yes! This might actually work.  Tonight I showed the video to Brayden before his fill and he knew something was up and he said No Josh :(  and he didn't want to watch it.  I got the new toy out and he was excited to play with that, then it was time for the fill and he forgot about his new toy and just screamed and cried like the previous weeks. 

Finally after 10 minutes with 4 of us trying to hold him down,Geoffrey got the 1st needle in.  Then I started to feel something warm, yup Brayden pees on me.  Luckily I had a towel on my lap, so I didn't get too wet.  But I am sure deep down, Brayden thought that was pretty funny!

We got another good fill tonight.  We got 100 cc's on the right expander, 80 cc's on the left expander and 65 cc's on the leg.  If we keep it up, we will be going past our goal, which would be amazing!

Right expander at 790 cc's, goal is 1000 cc's, left expander at 595 goal is 750 cc's and leg is at 420 cc's and goal is 500 cc's

 

Left expander and leg expander

 

Right expander

 

Leg expander

 

 

 

Fill #6 and 1 month till surgery!

Can't believe we are at fill # 6 already, but we are happy we are past the half way mark and doing great! Today marks 1 month till surgery, how I wish I could just wake up tomorrow and it could be May 7th.  I am ready for this round to be over with and I am ready to see our results.  If we keep things up the way they are going, we will reach our goals and get great results. 

Tonight 2 of Geoffrey's co-workers came over to help us with the fill, Karen and Kristin.  They wanted to see the process and have been supportive of Brayden from day one.  It's always good for people to come over to see the process and understand what Brayden goes through.

Geoffrey talked to Mim this week to see if we could give Brayden anything before we do his fill to calm him down and she said only thing would be tyneol.  Well we wanted something to relax him, he's not in pain, he's scared.  So tonight was another battle of trying to hold Brayden down.  He kept wanted to climb up on me and moving his legs around like crazy.  Finally we held his legs down to get the 1st needle in.  By the time Geoffrey stuck him with the 3rd needle, Brayden was so exhausted of crying and screaming that he didn't move around as much.

On a good note, we had another good fill tonight! We got 100 cc's on the right now at 690 cc's.  Left we got 75 cc's and now at 515 cc's and the leg we got 60 cc's now at 355 cc's.  We are very happy with our numbers right now.

Right expander at 690 cc's

 

Left expander at 515 cc's

 

Leg expander at 355 cc's

 

Bubbles looking great and getting so big now!!