Brayden's Journey

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!







Thursday, October 9, 2014

Surgery #11 is 2 weeks away and October is National cookbook month

Can't believe Brayden will be having surgery #11 in two weeks today.  So thankful we started this nevus journey when he was only 7 months old.  I have noticed that surgery has been harder on him the older he gets but some how he always amazes me and does better then I could.  This surgery will be much easier on him because he won't be getting any expanders in.  Dr. Bauer and Dr. Dickie will be cleaning up the scar tissue and removing some satellite spots.  Praying for no problems during the healing process. 

October is national cookbook month! If your looking for a stocking stuffer or a great gift for someone, this is the perfect gift! It's a fundraiser cookbook that we put together to help out with Brayden's medical bills. You can buy online or contact me.  They are $20.00 or donations.  And huge THANK YOU to everyone that has already bought one and supported Brayden. 

Little chef in training
Brayden's cookbook

Brayden started preschool last month and he is loving it! He gets excited to go to school and loves learning and playing with his new friends.  I am so happy he is loving school so much and this is another reason I am thankful we started surgery so young because now he won't be missing too much school because of surgeries. 

Please keep this little guy in your prayers on the 23rd and thank you everyone for your on going love and support

 Brayden's 1st day of school


Tuesday, August 19, 2014

Brayden is just about healed and surgery #11 is 10/23/14

Over the past few weeks we have been doing wet to dry dressing changes 2 times a day and putting an ace wrap around his stomach. His hole is just about closed up! And just in time before we head to Arizona to visit our friends who we miss so much.  Brayden is so excited to go visit his 2 nevus buddies, Joshua and Zach.  I love how they have a special connection and they know they are not alone.

I am hoping in a few days his side will finally heal up completely and we can ditch the dressing changes and ace wrap.  We are very happy how he healed up overall.  Dr. Bauer does such amazing work!

I emailed Dr. Bauer last week about Brayden's satellite spots and Dr. Bauer said we could have surgery to remove some of the larger ones in October or wait a few years.  We would rather get another surgery over with that way he can heal this winter.  We will be going to surgery #11 October 23rd with Dr. Bauer and Dr. Dickie, they will work together on this surgery that way they can get more removed.  They surgery will be an easy surgery, they will just cut out the satellite spots and stitch it back up.

On a good note, Brayden will be starting 3 year old preschool next month.  He will be going 2 days a week, I am happy he will be starting school so he can be around other kids and learn new things.  So happy we started this nevus journey when he was young, so we don't have to pull him out of school.

Looking good

 Brayden wanted to do a silly face! 
 Even his brother wanted to show off his butt, little brother copies every move Brayden makes

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.