Brayden's Journey

Wednesday, November 9, 2016

Brave Brayden turned 6 and his stitches are out!

November 1st  Brayden turned 6! Can't believe he is 6 already.  He had a fun birthday party last weekend with his family and friends.  So hard to tell him to take it easy still! He has been asking me lots of questions lately.  He wanted to know when he had his 1st surgery, which he was 7 months old.  He said, "Wow" mom I was only 0! Yes Brayden you have been a brave boy from the start! 

So thankful for my friend Steph.  She took out his stitches on Sunday.  His leg is looking great! It didn't go so well taking them out.  He said I just want to go to Dr. Bauer and be put to sleep.  He also said are you trying to kill me, I think I'm going to die.  Ugh just broke my heart hearing him cry and say those things.  After awhile he calmed down but look at every stitch she took out.  I am so thankful we started his journey at such a young age.  I don't know how parents do it when they are this age and just starting this process.  But we are very happy the way his leg looks and healing.  

Now his back is another story.  Yesterday his teacher sent me this picture and said his shirt is all bloody.  So Uncle Brandon went to the school to give him a new shirt and they put a band aid on it.  I just pray it heals up and doesn't get any bigger.  He's suppose to be taking it easy till Monday.  But depending on this back, he might have to sit out of gym longer and recess.  He says he doesn't mind staying in for recess, he likes to color and hang out with his teacher.

Thank you everyone for keeping him in your thoughts and prayers!

Monday, October 24, 2016

Brave Brayden and surgery #12

We weren't planning on this surgery but since we were coming to Chicago for surgery and staying at our favorite place....Ronald Mcdonald House, we asked our friends and family to help us out with tabs.  Brayden collected 45 pounds of tabs in 1 week! What an amazing support system he has, we are very thankful for everyone who is praying for this sweet brave boy! We are very proud of him and he has been through so much these first 5 years in his life.  Some of us have never had any surgeries and this brave boy....just had #12!! Thinking of that makes me realize how brave and special he really is!  

Here he is with his tabs before the weigh in at Ronald Mcdonald House 

 Our room and amazing view at Ronald Mcdonald House 

TV room they have for guest on every floor 
 One thing this little boy loves is we had to take him to Lego Land.....He loved it! 
 Look at that sweet smile, he had so much fun!

 Sunday was a perfect day to walk around the City, it was 70 out! We had to make a special trip to Build-A_Bear! For Brayden's 1st surgery he got a monkey from it was only fitting to get him another one.  He said it's so soft he will cuddle with it after surgery!

 Sorry Brayden, not going to get this! ha
 Walking around the city, had to take a picture by the horses
 Chocolate milk shake, his favorite! He loved getting free chocolate from Ghirardelli when we walked in
 Perfect evening to play on the roof top at Ronald Mcdonald House

 Play area at Ronald Mcdonald House, so fun!
 Night before surgery all snuggled up with his super hero

Had to be up by 4 am and be at Hospital at 6 was at 7:30 am.  So early for us. When we pulled up to the hospital Brayden started crying.  He said,"Mom I'm scared." Ugh this just broke my heart, not what I want to hear from my son.  I asked him why he was scared and he told me he didn't want it to hurt and he was afraid he was going to wake up during surgery and that he didn't want the mask on him because he could stop breathing.  I know one thing I am thankful we started surgeries when he was 7 months old and that he is still young.  I asked him if he remembered surgery before and he said he didn't.  I told him I would be with him until he falls asleep and when he wakes up and that Dr. Bauer will watch over him and he's in good hands.  We finally got him calmed down and got him distracted.  Once we got in we played a few games of bingo and he won! I told him his great grandma Pat and grandpa Fred loved bingo!

Once it was time to go back to the OR he started crying again and said he's still scared.  They gave him some medicine to relax him but it didn't fully kick in.  They remolded the hospital and he got his own DVD player and he got to watch a movie until he went back, which he loved!

Surgery lasted over 1.5 hours and Dr. Bauer said everything went great! He said Brayden had 3 areas that was not healing so he went in and cleaned them up, he also touched up his scar tissue on his back and sides.  He had 2 spots of some nevus that was still on his right leg from the previous surgery so he cleaned that up as well.  Brayden is suppose to take it easy for 3 weeks now, So hoping he does this so he can heal and not have any issues.

Mommy and my brave super hero before surgery.  His grandma Rhonda made him this cape for his 1st surgery and brought it with us to every surgery

Grandma Rhonda, so thankful to have her for support, we couldn't have done these surgeries without her 

We waited 2 hours for Bradyen to get up once he was done with surgery.  He was sleeping good, which was much needed after everything he went through.  When he got up he was happy to see mommy and Grandma! All the nurses remembered him and couldn't believe how big he is now.  Last time they seen him, he was 3.  We just love this hospital, his doctor and all the staff.  They really make coming here for surgery that much easier.  

The nurse said we could leave once he ate, went to the bathroom and got his pain under control.  So he watched a movie and he was happy and ready to leave! I didn't realize when I packed his outfit last week, it would match his new build-a-bear!

1:30 and we finally left the hospital.....1st stop, his favorite ( and mommy's) Target! Since he was such a brave boy, we had to go to the toy aisle! Then he said he was super hungry so we went out for lunch and he ate a grilled cheese and also as we were leaving he asked us to take a picture! What a happy brave boy!! 

 Since he was feeling so good, we went to the mall and walked around. Win, win....he got a nap and mommy and grandma shopped ;)

Bonus....checked into our hotel and they had free wine tasting and snacks tonight, they must have known we were coming tonight! Much needed after our day.

Brayden is doing good tonight, just not walking around yet.  He says his leg is sore.  His whole right leg and foot is wrapped, so he picked out some cool Star Wars slippers at Target today.  He had pain meds at 1 and didn't have them again till 7 tonight.  I am sure all of us will be sleeping good tonight! Tomorrow we go to Dr. Bauer's office at 9:30 and go and see our favorite nurses, Mim and Susan! 

Thank you everyone for praying for my brave boy and all the messages, texts and phone calls.  Means the world to us that so many people love and support my little boy.  I know he may not understand now why he has to go through all of this, but one day....I hope he appreciates everything his family did for him at such a young age.  We all love you Brayden and I'm so proud to be your mommy! 

Monday, October 10, 2016

Another surgery for Brave Brayden #12 here we come!

Can't believe it's been 2 years since Brayden's last surgery.  I am so thankful that we started him at such a young age.  Just when I thought I could print out my blog because I was done with it, he needs another surgery.  Since June Brayden's back hasn't healed, it's the same areas re-opening over and over again. Most days when he comes home from school his poor shirt has blood on it.

We have tried everything possible to help it heal like creams and wraps.  Well nothing is working so we reached out to Dr. Bauer and he said, he needs to come to Chicago for surgery sooner then later.  Dr. Bauer will clean up these areas, remove the deep sutures that is causing the secondary inflammation that is causing the continued breakdown of the skin.  Once he does this, we pray he heals and no more problems.  This will be an easy surgery for him compared to the others but still it's another surgery I was not wanting him to go through.  

I asked Brayden how would he like to go to Chicago and see Dr. Bauer and he could fix his back? He said that would be fun and he would also love to stay at the Ronald Mcdonald house! I am so happy he has good memories of Chicago and doesn't remember all the bad things.  He also asked if his little brother could stay behind so we could do some fun things without him! Ha.  I found a Legoland near Chicago and Brayden is so excited to go!  His birthday is coming up, so I thought this would be a perfect treat for him before surgery on Monday.  We are leaving on Friday, that way we can have a few fun days in the city before surgery. 

Here's a picture of his open wounds.  For awhile I couldn't figure out why he didn't like going to gym class, well then he told me they have to do sit ups and it hurts his back.  Now I can see why he didn't want to go.  He didn't like to tell us it was hurting him, that is the way he is.....he keeps things in.  I hope he learns to tell us if something is hurting so I can help solve the problem for him.  

Please keep my little guy in your prayers, he is such a strong brave boy and I am so lucky to be his mommy! 

Wednesday, November 26, 2014

Results from GI Specialist

We finally heard back from the GI Specialist and he reviewed the results we sent him.  He  said he didn't find any blood in the 3 samples we sent, which is great news! He is thinking the coffee grounds where caused from all the stress Brayden had while going through surgery.  He did have 11 surgeries the past 4 years, I can see why his body was stressed.  I am happy we got a second opinion about this and now I don't have to worry about this.  We will keep an eye out for anything unusual and if we see anything we will let the GI Specialist know right away.  So for right now, we don't have to worry about any surgeries in the near future and he can be like any other 4 year old boy!

Thank you everyone for praying for Brayden and always supporting him, means the world to us.  He is one very lucky boy to have so much support!

Sunday, November 16, 2014

GI Specialist

Wednesday we went to GI Specialist in Des Moines to see Dr. Carlin.  He said that he didn't think Brayden had any major issues going on since he doesn't complain about his stomach hurting or throw up regular.  But he wanted to make sure, so he sent us home with a kit to check his stool.  We had to get samples of his stool for 3 days and send the results back to Dr. Carlin.  Once he got the results he will check for blood.  Once he reviews the results and if he sees anything wrong he will put Brayden on acid reducing medication for a couple of months.  After that he will re check his stool for blood and if still positive he will perform an upper endoscopy for further evaluation. 

So far it sounds promising and nothing too major which we are happy about.  Now getting this stool samples hasn't been fun.  Ha.  But Brayden thought it was pretty funny when we had to get samples of his stool!

Monday, November 10, 2014

Stitches are out!

Can't believe it's been over 2 weeks since Brayden's surgery.  He is healing up great and it has been hard to keep him from running around like doctors orders. 

Brayden turned 4 on the 1st, can't believe he's 4 already.  He was so excited for his birthday this year and loved celebrating with family and friends.  He had a costume birthday party and he dressed up as Spider-man.  He also brought cupcakes to school for his friends and he thought that was pretty fun. 

Last night we took out his stitches.  I was happy he didn't have too many to be removed and we could do it at home.  Geoffrey and Uncle Brandon took them out while I tried to calm Brayden down.  Poor little guy was crying the whole time and I tried to distract him with my phone but he just wanted to watch what they were doing the whole time.  I told him he is such a brave boy and he told me, "Mom I am not brave, I am scared and I am crying the whole time." Ugh hearing that broke my heart.  I told him he was brave because we didn't have to go to the doctor and taking them out at home.  Once he was done, he was a happy boy again and in a great mood.  I am so thankful we started so young with him.  I do wonder how much he will remember of this as he gets older.  I love being his mom and being here for him throughout this whole journey. 

Wednesday we are off to Des Moines to see a GI specialist for his stomach.  I am praying this is nothing serious.  Brayden has been through enough and we don't need another set back. 




Tuesday, October 28, 2014

Surgery #11

Can't believe Brayden had surgery #11 already.  His nevus journey is nearing the end which is an amazing feeling, especially with everything Brayden has been through these last 3 years with surgeries.  Over these last 3 years, Brayden has proved to us how strong he is and that he is such a brave boy.

For this surgery my mom and I took Brayden to Chicago.  Wednesday we got to Chicago and went to Dr. Bauer's office at 2:00 for a pre-surgery appointment with Dr. Bauer.  He wanted to look over Brayden and get a game plan for surgery the following day.

Once we left his office, we headed downtown and checked in to our new home for the next few days, the Ronald Mcdonald house.  Brayden was super excited to be going back, he loves all the fun things he gets to do while he stays at the RMH. 

The first night we got to hang out with our nevus friend, Brooklyn and her mommy Merilee.  We all went out for dinner at Eataly and afterwards we came back at the kids decorated huge pumpkins. I love all the fun things they put together for the kids to do at the RMH. 

They even gave us these cool hats at the RMH....Brooklyn and I

4 nevus buddies playing together at RMH.  Jace on the far left from Florida, Brayden, Brooklyn from Montana and Michael from Russia.  Amazing how people from all over the world come to Dr. Bauer.

Out for dinner at Eataly

 Decorating pumpkins

Thursday morning we left for the hospital bright and early at 6 am.  Brayden had 9:30 am surgery time. 
Before surgery with my brave boy! Love him!
Talking to the nurse before surgery, everyone always remembers Brayden and loves him
Grandma Rhonda and Brayden before surgery
Playing on I-Pad before surgery
Ready to head into surgery #11
This surgery he had Dr. Bauer and Dr. Dickie work on him.  Dr. Bauer said everything went great, he worked on his butt area by cleaning it up. He had a lot of scar tissue in his butt crack and was really hard to wipe him and keep clean.  Dr. Dickie took off 7 satellite spots on his legs.  This surgery was such a breeze compared to the rest of them.  We have to wrap his legs for a  few days and after a few weeks we will take out his stitches.  Brayden is suppose to take it easy for 3 weeks that way he can heal, easier said then done with a 3, almost 4 year old. Especially when it's his birthday week and he's SUPER excited to be turning 4!
 One concern Dr. Bauer had with Brayden was while he was in surgery he was coughing on what you call Coffee grounds.  That is old blood inside his stomach.  So we will be taking him to a GI specialist soon to get him checked out.  I made a appointment with a specialist on November 12th in Des Moines. My mom and I will take him to that.  Dr. Bauer said he also noticed it last surgery and he doesn't think it's a big deal but better be safe then sorry.  Praying it is nothing. 
When Brayden got out of surgery and went into recovery he was sleeping for over an hour before he got up.  When he got up, the first thing he asked for was to go to Target ( he wanted a new toy). I told him when we leave the hospital we could go to Target.  Bless his little heart and everything he has been though.
Finally in our room and out of recovery and even has a smile on his face

Having his favorite after surgery, PIZZA and chocolate milk!

After Brayden enjoyed his pizza, he watched 3 movies and slept through the night! The next morning we were off to Dr. Bauer's office for a dressing change. This was the happiest Brayden's ever been at a dressing change, so we had to get a picture with our favorite nurse, Mim! She is such an amazing nurse and we just love her!

These are some of the spots Dr. Dickie cut out, we will see how they heal over the next 3 weeks


Dr. Bauer cleaned up some areas on his butt, so far Brayden is doing good with this and doesn't seem to bother him
Brayden was doing great after surgery and he didn't take any pain meds after the 1st day.  What a strong brave boy I have!
Back at the RMH house playing with his nevus buddies Brooklyn and Danika from Canada
 Making bats at RMH
 Brayden with his nevus buddies! Brooklyn and Danika! They had so much fun playing together, so cute!
 On Saturday we took Brayden to the Shedd aquarium, he went to the aquarium this summer with daddy and Grandpa Mike and loved it and has been talking about it ever since. We even lucked out and got free tickets from the RMH...seriously the RMH is so amazing! And all the yummy food they serve everyday is awesome!

Brayden has been dying to stop at the BIG McDonalds we always see downtown, it is the 50th location and a Rock and Roll McDonalds, so we stopped and he got some ice cream, he loved it!
Sunday we took off and headed back home. Brayden asked me if we could stay longer at the RMH because he was having so much fun! Over all this surgery was much easier on him and he bounced back like a champ.  We will take his stitches out in a few weeks once he's healed up.  It's so nice to not have expanders or drainage tube this time.  Thank you everyone who has been thinking of my brave boy! He truly is amazing and such a strong boy!
And I can't believe this brave boy will be 4 this week! He is getting super excited for his birthday and dressing up as batman for Halloween!