Brayden is drain free & tomorrow is National Rare Disease Day!

Saturday night Brayden had his last dressing change.  His stitches are healing up great and it just amazes me how strong he is when we are doing the dressing changes.

Full of smiles after dressing change

Pointing to his arm where he has a small bruise and saying owie

 

Happy boy! 

 

 Sunday morning, I emailed Dr. Bauer about Brayden's drainage tubes and explained how they weren't draining any more and if they were, it was hardly anything.  Usually you keep them in 10 days or if they stop draining, you can pull them early.  Dr. Bauer said it was time to take them out.  So we were happy about that, Brayden would feel better once they are out.  Also that meant no more dressing changes!

Sunday afternoon Brayden started taking a few steps and also eating again.  So happy to slowly seeing him do better. That evening, we took the drainage tubes out.  He had 4 to pull this time, which is never fun.  I held on to Brayden and Geoffrey and my mom pulled them out.  It's pretty easy to take them out, you cut the stitch and pull out the tube.  Of course, it wouldn't feel good to anyone having a tube pulled out.  I don't think I have ever seen Brayden cry so much in pain.  It broke my heart and of course, it was crying right along with him.  He kept saying owie, daddy no.  It was so hard to experience all of that.  Just wish I could take away his pain and not have to put him through any of this.  Very hard at times being a parent, but I do know we are doing what's right for him and he will thank us someday.

Once the 4 tubes were out, Brayden was so happy again.  Glad that is all over with.  Now we have a break until Friday when we do our 1st fill for this round. Praying we have no problems and this round is smooth for us!

We still have plenty of cookbooks for sale if anyone would like one, or if you know anywhere I can sell them, please let me know.  All the money we raise goes towards Brayden's medical expenses, travel expenses, etc.  Thank you everyone who already donated and contributed towards Brayden.  He is one lucky boy for all the love and support he gets!

 Tomorrow is National Rare Disease Day.  The condition that Brayden has is considered a rare disease.  1 out of 500,000 babies are born with this.  The chances of his baby brother are 1 out of 500,000.  If his brother would happen to get this, I better start playing the lottery! Here are some facts about Nevus:

Let's Break it Down: Large. Congenital. Melanocytic. Nevus.

Large

Since nevi can be found on any part of the body, and grow as the body grows, the term large can be difficult to define. Doctors don’t all use the same definitions. Here are the most common ones - a doctor may use any of these in defining the size of a nevus.
A nevus may be described as large if:

• It would take more than one surgical excision to remove. Surgeons and others involved with the removal of nevi, sometimes use this definition.
• It covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand.
• It measures over 8” (20cm) at its largest point on a fully-grown adult. When applying this definition to a newborn or child, the nevus is large if it is expected to be this size by adulthood. For example, a 3” (7cm) lesion on the head or a 2” (5cm) lesion elsewhere, noted at birth, will grow to be at least 8” by adulthood. Therefore these would be considered large nevi at birth.
• It covers a large portion of a major anatomical site. Thus, nevi on the head, legs or arms may be categorized as large even if they do not meet the previous definitions.

The term giant is sometimes used when describing nevi. A giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi (or just satellites) are smaller melanocytic nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth. Sometimes during diagnosis, doctors may use a large number of satellites to support their diagnosis of a large or giant congenital melanocytic nevus. Sometimes a nevus can look like a large mole or a large birthmark.

Congenital

Congenital simply means that it is present at birth. Sometimes people get confused about the difference between congenital and hereditary. Hereditary means you get if from your parents and/or pass it along to your kids. There is no evidence that congenital nevi are hereditary. We know of cases of identical twins, where one child has a large nevus and the other does not. We know of no cases where identical twins both have a large nevus. We know of no cases where a person with a giant nevus has either a parent or a child who also has one.

Melanocytic

Melanocytic means that it is pigment-based. Melanin is the pigment found in human skin. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Nevus

Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark and can be used to describe virtually any mole or birthmark.

Let's Break it Down: Large. Congenital. Melanocytic. Nevus.

Large

Since nevi can be found on any part of the body, and grow as the body grows, the term large can be difficult to define. Doctors don’t all use the same definitions. Here are the most common ones - a doctor may use any of these in defining the size of a nevus.
A nevus may be described as large if:

• It would take more than one surgical excision to remove. Surgeons and others involved with the removal of nevi, sometimes use this definition.
• It covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand.
• It measures over 8” (20cm) at its largest point on a fully-grown adult. When applying this definition to a newborn or child, the nevus is large if it is expected to be this size by adulthood. For example, a 3” (7cm) lesion on the head or a 2” (5cm) lesion elsewhere, noted at birth, will grow to be at least 8” by adulthood. Therefore these would be considered large nevi at birth.
• It covers a large portion of a major anatomical site. Thus, nevi on the head, legs or arms may be categorized as large even if they do not meet the previous definitions.

The term giant is sometimes used when describing nevi. A giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi (or just satellites) are smaller melanocytic nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth. Sometimes during diagnosis, doctors may use a large number of satellites to support their diagnosis of a large or giant congenital melanocytic nevus. Sometimes a nevus can look like a large mole or a large birthmark.

Congenital

Congenital simply means that it is present at birth. Sometimes people get confused about the difference between congenital and hereditary. Hereditary means you get if from your parents and/or pass it along to your kids. There is no evidence that congenital nevi are hereditary. We know of cases of identical twins, where one child has a large nevus and the other does not. We know of no cases where identical twins both have a large nevus. We know of no cases where a person with a giant nevus has either a parent or a child who also has one.

Melanocytic

Melanocytic means that it is pigment-based. Melanin is the pigment found in human skin. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Nevus

Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark and can be used to describe virtually any mole or birthmark.
- See more at: http://www.nevus.org/what-is-a-large-cmn_id554.html#sthash.oERF9mAb.dpuf

Let's Break it Down: Large. Congenital. Melanocytic. Nevus.

Large

Since nevi can be found on any part of the body, and grow as the body grows, the term large can be difficult to define. Doctors don’t all use the same definitions. Here are the most common ones - a doctor may use any of these in defining the size of a nevus.
A nevus may be described as large if:

• It would take more than one surgical excision to remove. Surgeons and others involved with the removal of nevi, sometimes use this definition.
• It covers more than 2% of the patient’s total body surface area, or is larger than the palm of the patient’s hand.
• It measures over 8” (20cm) at its largest point on a fully-grown adult. When applying this definition to a newborn or child, the nevus is large if it is expected to be this size by adulthood. For example, a 3” (7cm) lesion on the head or a 2” (5cm) lesion elsewhere, noted at birth, will grow to be at least 8” by adulthood. Therefore these would be considered large nevi at birth.
• It covers a large portion of a major anatomical site. Thus, nevi on the head, legs or arms may be categorized as large even if they do not meet the previous definitions.

The term giant is sometimes used when describing nevi. A giant nevus covers a very large part of the body, usually involves the torso, and is usually accompanied by a number of satellite nevi. Satellite nevi (or just satellites) are smaller melanocytic nevi. When a child is born with a giant nevus, it is common for satellite nevi to be present at birth. It is also common for satellite nevi to appear after birth. Sometimes during diagnosis, doctors may use a large number of satellites to support their diagnosis of a large or giant congenital melanocytic nevus. Sometimes a nevus can look like a large mole or a large birthmark.

Congenital

Congenital simply means that it is present at birth. Sometimes people get confused about the difference between congenital and hereditary. Hereditary means you get if from your parents and/or pass it along to your kids. There is no evidence that congenital nevi are hereditary. We know of cases of identical twins, where one child has a large nevus and the other does not. We know of no cases where identical twins both have a large nevus. We know of no cases where a person with a giant nevus has either a parent or a child who also has one.

Melanocytic

Melanocytic means that it is pigment-based. Melanin is the pigment found in human skin. Normally, melanin is distributed fairly evenly throughout the skin. Congenital melanocytic nevi, on the other hand, are made up of pigment-producing cells called nevomelanocytes. These cells are not evenly distributed. When many nevomelanocytes are clumped together, they can result in moles on the skin because of the higher concentration of melanin (pigment).

Nevus

Nevus (also spelled naevus; plural nevi) in the broad sense, means birthmark and can be used to describe virtually any mole or birthmark.
- See more at: http://www.nevus.org/what-is-a-large-cmn_id554.html#sthash.oERF9mAb.dpuf

Back home again! And before & after pictures of stomach

Wednesday after they went to Dr. Bauer's office, Mom, Geoffrey & Brayden went back to the hotel for the night and relaxed.  That is the best thing for Brayden since he doesn't like to be moved.  He just laid in one spot all day and night.  He would point to his leg and say owie.  His leg bothers him since he has that expander in it. 

Mom & Geoffrey ordered Lou Malnatis pizza for dinner.  They were hoping Brayden would eat some too since pizza is one of his favorite foods, but he wouldn't even take a bit.  It will take him a few days before he wants to eat again.  Luckily he is drinking lots of milk, so that helps.  

That night Brayden slept 12 hours straight! What a brave boy! They didn't have to leave the hotel till noon.  So that morning they talked to Brayden's Grandma Kate, Auntie Megan and Great-Grandpa Hugh on skype.  Brayden was even playing peek-a-boo with Great-Grandpa and laughing.  Love how the simple things can make him laugh again. 

Brayden did great on the flight, he slept for about 3 hours and didn't fuss to much.  Last night he was happy to be home and went straight for his train table.  He wanted to stand but with his leg expander in, he kept shaking and Geoffrey had to be right beside him so Brayden wouldn't fall.  It will take awhile before Brayden can stand and walk again. Right now he is happy laying on the couch and watching cartoons and his favorite movies.

After he got home, I helped mom and Geoffrey do a dressing change.  Brayden hated that and said owie and cried some.  He also doesn't like his tubes being changed or his diaper.  We have to change his tubes every 4 hours and so far it's not draining that much.  So we might be able to pull them before the 10 days are up.  Which will be nice, that way no more dressing changes and also he will be able to take a bath again.

Last night he slept for 11 hours straight and the only time he cried was getting him up and moving him.  He still won't eat anything today.  But he did drink 2 sippy cups of milk. 

On the way to the hospital surgery on Tuesday morning for surgery

 

 

1st dressing change at Dr. Bauer's office, with his amazing nurses Mim & Susan

 

 Right expander is 1000 cc with 150 cc in right now and left expander is 750 cc with 120 cc to start

 

Left leg expander is 500 cc with 60 cc to start

 

My brave little boy! Someday this will all be a memory in our past and he won't remember any of this

Brayden's nevus under his stomach before

 

And now! Dr. Bauer did an amazing job cutting out the nevus, not much left up front now

 

Brayden smiling and of course he wanted some orange slices at Great-Grandma's....the only food he has ate since Tuesday .....Cheese!

 

 

 

 

Lucky #7 surgery for super hero Brayden!

Yesterday was lucky #7 surgery for Brayden! What a stressful few days we had before surgery day.  Brayden came down with a cough.  So last Friday I called Dr. Bauer's office, they said if he gets a temp, or gets worse over the weekend.  We would need to cancel surgery.  With our time frame with his baby brother arriving in June, we didn't need any set backs and needed Brayden's surgery to be on schedule. Luckily he didn't get any worse and everything worked out and he was good to go for surgery day.

For this surgery daddy and his Grandma Vauble are with him in Chicago.  He is very lucky to have such supportive family during these times.  It has been hard on me, being so far away but I know he's in good hands.

Here is Brayden before heading to the hospital, he woke up in good mood and it was nice they didn't have to report to the hospital until 10 am with a 11:30 surgery.

All bundled up and ready to leave

 

At the hospital, got cleared for surgery and playing with toys

 Grandma Vauble reading a book

 Coloring before surgery

 Happy super hero Brayden! Ready to take on surgery #7! Luckily he was in a happy mood while they waited for surgery

 Daddy & Brayden before surgery

Surgery lasted 2.5 hours. Dr. Bauer said surgery went well and his body responded well. Dr. Bauer was planning on putting in 4 expanders. Brayden has a little bit of nevus under his belly button on his stomach, Dr. Bauer was able to do an incision and cut out most of the nevus in that area. He put in dissolvable stitches in his stomach, so no need to get them taken out.  Since he was able to cut most of the nevus off the stomach the 4th expander was no longer needed.  We were happy about that!

Dr. Bauer is part of a nevus study at a University and the nevus he cut out, he sent to the lab to do some research on it. It will be interesting to see what they find out. Brayden got 3 expanders in, 2 in lower back and 1 in thigh that wraps around the side. His leg expander is 500 cc expander with 60 cc's to start.  His left back expander is a 750 cc expander with 120 cc's to start and his right back expander is 1000 cc expander with 150 cc's to start.  He has 2 ports on the right leg and 1 on his left butt.

Dr. Bauer is confident as long as we have a good next 12 weeks with no infections or problems, this will be the last round of expanders! Then the following surgery would be to cut out and clean up any remaining nevus and scar tissue.  Guess we will see what happens over the next 12 weeks, praying for a perfect round for Brayden! 

Brayden in recovery, this is one of the hardest parts when they come out of the anesthesia and having them be in pain and not knowing what just happened to them.

 Finally in his room for the night, talking some and watching tv shows on ipad and playing games on ipad

Few hours after surgery and he's eating his favorite for dinner...PIZZA!

 

Brayden has been on Tyneol with codeine and ibuprofen every 4 hours to manage his pain.  He cries every time they change his diaper or change his tubes.  It hurts him to move and when Geoffrey was changing his diaper, he said "No daddy" and his legs are shaking.  So hard to see your kid in pain.  

 

Finally getting some needed sleep

It was a short night. Brayden didn't get to sleep until around 1:00 and then was fussy off and on. When the nurses came in to change tubes during the night it woke him up and made him upset.  

Ready to leave the hospital and head to Dr. Bauer's office for the 1st dressing change! Wasn't happy about moving around this morning to change, but each day he will get better.  Amazes me how strong he is and I can't wait to someday have all of this behind us.  What a journey he has been on these past 2 years of his life. I admire his strength and I am so blessed to have him as a son.

Brayden didn't enjoy his 1st dressing change. He kept saying, "No,No,No."  But Geoffrey said he wasn't shaking too bad.  The front is looking great and hardly any nevus left! Maybe the width of your pinky and the stitches look great.  So it will be nice to see how that all heals up.  The rest of the expanders look good and they said to take it easy with the leg expander and doing the fills. 

Now for the rest of the day, they are going to the hotel and get some rest and relax.  Sleep is the best thing for Brayden right now while he recovers. 

Thank you everyone for the prayers, means a lot for all the support!