Wednesday Brayden had his 6th laser surgery with Dr. Price at the Phoenix Children's hospital.  Daddy took him since, I had to work.  Brayden was in a good mood while he waited for Dr. Price to take him back.  Can't believe Brayden has had over 12 surgeries since he has been born.  What a brave little boy we have.  Can't wait for all of this to be behind us.

Dr. Price said the laser surgery went well.  So went higher on the voltage for the laser then she did last time.  Some of the areas have blistered.  We have been putting cream on him and it's starting to heal up.  Will take a few weeks to fully heal and see the results.  Over all Brayden is doing good and enjoying his time off from tissue expanders.

Brayden playing in the play area before surgery

 

Such a happy boy!

 

My 2 handsome boys...brave daddy and brave Brayden

 

 Few days after laser surgery, starting to scab over and heal already

Look at how awesome he healed up! So happy we had no problems this round with healing and not too much nevus left now....yay!

Right side pretty much all gone

Left side not too much left.  Next round of surgery in Feb, he will get one expander in leg and one in belly



Need a Christmas gift for someone this year or a stocking stuffer? Why not support Brayden and buy  cookbook :) And thank you everyone who has been supporting Brayden, without your help we would not make all these surgeries possible.  Deductibles, flying to Chicago for surgery and unpaid time off adds up.  But with the donations and cookbook sales, it has sure helped make all of this possible. 

Have a wonderful Holiday with your loved ones this year! I know we will

 

Update of birthday boy :)

Been a few days since the last post, been a busy few days that's for sure.  With travelling back to Arizona, Halloween and Brayden's 2nd birthday today!

Night of surgery Brayden slept great, he went to bed around 11 pm and slept until 8:30 am.  The nurses came in every few hours to check on him and good thing they did.  At 4 am, the bed was full of blood.  Either it was from his draining tube or the incision.  Luckily they are here to help and they got new bedding for us and cleaned Brayden up and then we were back to sleep again.

The day after surgery, we went to Dr. Bauer's office and they did the 1st dressing change.  Brayden was not happy about this and cried the whole time.  That area is still so sore from surgery and I can see why he was in so much pain.  I was happy with the results, especially since we only did 5 fills and we were planning on doing 11 fills. 

Dr. Bauer thinks Brayden will need to more round of expanders, we will be booking his next round soon.  Should be in Feb or March sometime.  I am sure that will be here before we know it.

When we were leaving, Mim asked if we would talk to another nevus family and that they have a 5 year old daughter with bathing trunk nevus. She just had a few spots removed off her face and they decided to leave the rest. They were happy to meet another nevus family and also that Brayden's nevus was similar to this girls. I am always happy to share Brayden's journey and to educate other people about him.

 

 

After we left Dr. Bauer's office we were off to have some lunch and then to the hotel to relax for the rest of the day since we had to be up at 4am the next morning.  Every surgery Brayden just amazes me with his strength and how strong he is.  He hardly complained the day after surgery and he even slept through the night without any pain meds.

Thank goodness for the i-pad what a life saver this has been with surgery, recovery and flying with a toddler

 

 

This was the hole on the left expander the day of surgery, so thankful God was watching out for us and we made it to Chicago in time to get these expanders out

 

With my brave boy before surgery

I told Brayden that he needs to wear his cape since he is a super hero and he said no momma, I told him he is very strong and how proud I am of him

 

Brayden with Great Grandpa and Grandma before surgery, so lucky to have them for our support

Playing with toys while waiting for Dr. Bauer

 

Wed morning we were off and flying back to Arizona at 7 am, Brayden was perfect on the flight and he watched his movies and slept most of the flight, didn't cry once.  Once we landed, he was so happy to see daddy again. That night we even took him trick-or-treating.  I couldn't believe that he was walking around and only taking pain meds a few times a day already.  Wow, what a strong little boy he is!

 

Today was Brayden's 2nd birthday.  This was the 1st day, we had the whole day off together as a family.  What needed time this was for all of us after this past stressful month. We started off at the zoo, which Brayden loved.  Then we went to lunch and to the train park.  Was a perfect day!

 

Pretty sure Brayden agreed that he had a pretty awesome birthday!

 

 

Here is Brayden's nevus before

 

Right side before

 

Left side before

 

1st surgery results

 

2nd surgery results

 

3rd surgery results ...very happy with results, especially after the rough round we had

 

Left side ...getting closer to being done

 

Right side....Nevus free!!

 

 

Now we pray that he heals up perfectly and no problems and we can put this round behind us.  I am so happy we started Brayden at such a young age and that he does so great with all these surgeries.  He is such an amazing strong boy and I am so blessed to be his mommy!

 

 

 

Surgery #6 done

What a week we had last week. Dr. Bauer looked at some updated pictures we had of Brayden and he was not happy with what he was seeing, the left expander that was red from when he was in the hospital was still red. Dr. Bauer was worried about that area getting to thin. He said if we can figure out a way to get to Chicago for surgery in 5 days, that he wants to get these expanders out 3.5 weeks early.

After first I thought no, way how would we make this work?! First of all my parents are out of town this week. And I didn't want to go alone, my grandparents called me and they told me they would be able to meet us in Chicago.

Now we can't fill the left expander and the right expander is blocked, so it really does us no good to wait the 3.5 weeks.
After talking to Geoffrey we decided we didn't want to risk loosing the skin we had stretched and we better go to Chicago. Brayden and I flew out on Saturday morning and he did great on the flight, he was perfect and played on the i-pad the whole time.

Yesterday when I was changing him, I noticed a small hole on his expander. , so I was happy that I was in Chicago and Monday was surgery. If we would have decided to wait the 3.5 weeks, I would have been freaking out in Arizona.

This morning, Brayden's hole was bigger, so I was happy today was surgery day. We didn't have to be at the hospital until 9 am, with a 10:30 surgery which turned in to a 11:30 start time for surgery.

Brayden did great when we got to the hospital, played on his i-pad and played with other toys in the room. When I went to the OR room with him, he was pretty loopy from his happy drugs they gave him. He started making animal noises, going moo, baa, oink...the nurses got a kick out of him. He also gave me lots of kisses and waved bye to me. Always makes that part better when he's happy going back to surgery and not screaming.

Surgery took 3 hours, Dr. Bauer said everything went well and that the hole in the expander didn't matter much sine it was close to the stitches. He said the problem we had with the right expander and why we couldn't get anything in when we tried to fill it the past few times, the expander had flipped and caused a kink between the tube and expander. He said the port was fine. I asked him if this has happened before and he said no, this is very rare. So of course it had to happen to us with our luck.

He said he was happy with the results and he even did some advancement on the left butt this time. He said the right side is pretty much gone now. He thinks Brayden will need 2 more rounds of expanders and the next round he wants to put one in his belly and one in his thigh. Guess we will take this one surgery at a time and see how he heals up. On the bright side of things, we have 6 surgeries behind us now and we are getting one step closer to being nevus free.

I know I am so happy this round is over with, wow what a stressful round we have had. Seems like it was one stress after another. I am happy we were able to save the skin and we had some good results this surgery. Of course not as good as we would have if we had no problems, but still happy with our results. Can't wait to see them tomorrow at Dr. Bauer's office.

When I went to the recovery room to see Brayden he was crying so hard asking for mom, so soon as he seen me, I picked him up and rocked him and he was out for an hour.

This evening he has been eating pretty good. I asked him do you want some pizza and he said pzzzz. He was very happy to see pizza for dinner, he had 2 slices and also a pack of fruit snacks. He has also been drinking lots of water. Which is good.

The past 1.5 hours he has been crying non stop. He seems so uncomfortable and keeps saying owie mom, owie. Then all of a sudden he throws up every where on the bed. I jumped out fast as I could, but he still got some on me.

I was surprised he threw up, he has never done that before. Now that his tummy feels better he's laying in bed watching the movie Lorax.

Lets hope for a good night tonight for us and also want to thank everyone for all the prayers today. Means so much to us that Brayden has such an amazing support team.

Emergency surgery here we come

Yes, that's right, we are going for emergency surgery to Chicago on Monday, we will be having surgery 3 weeks early.  I got a call from Dr. Bauer's office this morning and they said after reviewing the picture I sent over, they would like to bump up the surgery if possible.  They are afraid if we wait until Nov 15th, that the left expander skin could get thin and that could cause more problems down the road for us.  Was I happy to hear this news after this already stressful round? Of course not.

Dr. Bauer said we could wait but he thinks we should move up the surgery, so I called Geoffrey and we decided the best thing to do was go to Chicago and figure out who will be going and if anyone can meet us to help out.  We didn't want to risk anything else happening to Brayden.

I called my parents and they are going to Canada on Saturday for a week, so now what?! Well just like our 1st round and our emergency surgery, my awesome grandparents are here to support Brayden! They will be driving to Chicago and picking Brayden and I up from the airport.  We arrive on Saturday and come back on Wed.

And guess who will be turning 2 next week?! What a busy birthday week we will have.  But I am happy that we will fly back in time for Halloween and also for his birthday and for Brayden's birthday, Geoffrey and I actually get the day off together, which never happens.  Just hope Brayden feels ok, so we can take him to the zoo.

Last week we had the stress of the right expander not filling, Dr. Bauer think it's something with the port being blocked.  This hardly ever happens, so of course it has to happen to us?!  Guess all this stress will only make us stronger, but I am about to my end of the stress that I can handle at a time.

Here is the area Dr. Bauer is concerned about, it's on the left expander in the middle.  That area has never fully healed from when he was in the hospital and he's just worried it will get worse over time

Fill #5 and the stress continues

This week has been another week of stress for us.  On Friday I get a letter from the Pediatric Infectious Disease doctor and they do not participate with any health plan.  Oh lovely, so know I have to call them this week and see what they can do about my bill and if they can reduce it at all. 

Then comes today, fill day.  Brayden's expanders were feeling super soft, so I was excited to do a fill tonight.  Erin and Brent came over tonight to help us and they even got Brayden 2 pairs for new shoes.  Puma's that light up and a pair of Tom's.  He's going to be one styling boy now! He is so lucky to have so many people that support him. 

Geoffrey started off with the right side, the good side and it went in great and Brayden didn't even cry.  He started pushing on the syringe and nothing would go in, oh great now what?! So he decided to try a new needle and still nothing would go in.  Then he tried another bag of saline maybe that was the reason.  Nope still nothing.  He had to poke Brayden about 3 or 4 times and Brayden did such a great job and watching a show on the ipad and didn't cry.  I am thinking that it could be a kink in the tubing or the port has flipped.  But I really don't think the port had flipped because when Geoffrey puts the needle in, he could feel the metal backing and it felt normal to him.

We emailed Dr. Bauer and he thinks the port is filled.  So tomorrow we will call Mim or Susan his nurses and talk to them about getting the port flipped back over.  Now I cross my fingers, we can do this and continue our fills.

The left side we got 75 cc's in which we are happy about.  We are not at 445 cc ont he left and 390 cc on the right since we didn't get anything in today. 

On a good note, surgery is 1 month away, now we just need some prayers and good luck our way so things turn out the way we want it to.

 

Fill #4...so thankful we are back to our fun Sunday fills!

This week has been super busy, Brayden got out of the hospital on Tuesday after 6 long days! So happy he is doing better and we got the clear to go home and not Chicago.  I emailed Dr. Bauer pictures of Brayden on Wed on his expander and he said to hold off on filling and see how it is in a few days.

Now Brayden is on Bictrim antibiotic 2 times a day until these expanders come out.  Brayden does get fussy at times taking it but overall he has been doing great taking his medicine.  His butt still isn't healed all the way and today I asked him at lunch time.  Brayden want to sit in your high chair and he said, no owie.  So he knows it still hurts him to sit.  I can't wait for that to heal

On Friday I sent Dr. Bauer updated pictures of Brayden's expanders and he said it's looking great and we could do another fill on Sunday! YAY! What great news that was to hear that, so happy we are back on track for our fills. 

Tonight Erin and Brent came over to help us with the fill. Nice having them over for support and especially since Brayden was freaking out and screaming pretty much the whole time.  I know Brayden is just scared because when the needle went in, he hardly cried.  So that does make me feel better it's not pain he's having, it just him being scared.  I tried giving him a sucker, fruit snack and he didn't want anything. 

The expanders were pretty soft since we didn't do fills for the past 2 weeks.  We got 75 cc's in the right now at 390 cc's and 50 cc's in the left now at 370 cc's.

The left expander does look better but in the middle along the stitches it is still a little red

 

Left expander at 390 cc's

 

Right expander at 370 cc's

 

HOME! Brayden is finally going home after 6 long days in the hospital

Last night Brayden kept saying ow, ow, ow when he would touch his arm with the iv in it.  The nurse looked at it and she said if he has to stay another day, they would have to take out that iv since his vein is starting to collapse.  So last night I prayed we could come home today and that would be one last stress for Brayden.

Last night, Kristy came by to visit Brayden and to keep us company for awhile.  She even brought Brayden a monster truck which he loves and 2 books and animal crackers! Nice to get something new to distract him from being bored in the hospital bed.  Brayden also got another donated from Janeen Savage, so sweet of her to always think about Brayden and donate money.  Which will definitely help us out with all the added medical bills. One thing that stinks, we spend $50 on medicine the day before Brayden went in to the hospital and now that has to go to waste. We do have around 100 cookbooks left, if you still need 1, please let me know.  They make great gifts for family and friends or if anyone has an idea where I can sell them, please let me know.  I have ran out of ideas and would love to sell the rest. 

Brayden tossed and turned all night, his arm with the iv was really bothering him.  This morning when the doctors came in, they said Brayden was looking much better and they would call Dr. Bauer to see if we could get the go ahead to finally go home!

Brayden got the clear from Dr. Bauer and he got to go home this afternoon! Wow, who would have thought last week on Tuesday when he had a high temperature, we would be in the hospital for 6 days. I am just happy we are going home and not an emergency surgery in Chicago right now.  They are going to keep him on bactrim which is an oral antibiotic for the rest of the time these expanders are in.  It does has some side effects so we have to watch for those.

Dr. Bauer said we can start to do our fills again, but we will have to take it easy and towards the end we will try to make up for the missed fill.

Thank you everyone for your prayers and support, we couldn't have gotten through all of this without all of you!

Getting better....but not enough to go home yet

Last night, Brayden had 2 visitor's Katie & Erin! They were so sweet they brought Brayden a dinosaur that he can ride! He will love that once he gets out of here and be at home again. He loves dinosaurs and cars, trains and planes right now.

 

 They also brought Geoffrey & I dinner, which was nice. We have been getting sick of eating hospital food and one of our favorite places, Oregano's!

 

 

 

And pizookie! yummy!

 

 

Brayden enjoying his pizza for lunch

And 2 suckers for desert

 

 

This morning Dr. Workman and the infection specialist doctor came in and they both said Brayden's left exapander is looking better.  The infection specialist said he talked to the lab and nothing else has grown on Brayden's culture.  He would like to keep Brayden on iv antibiotics for 1 more day and if everything looks better tomorrow.  They will put him on oral antibiotic, Bactrim and we will be on our way home! I guess I will start to get excited once I hear the words home!

 

Now that Brayden has this, we need to clean the house good and be careful with germs.  Since we are both exhausted from being in the hospital and also working while Brayden has been in, we will have to fine the energy to clean before he comes home. 

Infection specialists

The infection specialist just came in and he said that Brayden will always carry this bacteria. 5 out of 100 people have it and may never know you have MSRA.  But it's when you have an open wound, or just had surgery your body either adjust or shuts down and Brayden's body this time couldn't handle it and he got the infection. 

He wants to call the lab today and have them research more into this and he wants to figure out why his body is responding to the antibiotic clindamycin which it shouldn't be.  He said it could be because he had strep, but he's not for sure. 

I asked if this is contagious and he said that is very complicated to answerer.  He said yes, it can be, he doesn't want Brayden out and about in the hospital with children that just had surgery because they have a open wound and they could get it.  But from the average healthy person, no they will not get this from Brayden. 

Thought I better update the blog, while I had all of this medical information in my head, ha! So much to learn and process from all of this. 

The doctor will come by tomorrow after talking to the lab some more and he then will talk to Dr. Bauer and go from there.  They will keep Brayden on an antibiotic for the rest of the time his expanders are in and they won't release him until all the redness on his expander is gone. 

Brayden just had his 1st sponge bath since he has been here and he now he is busy watching Finding Nemo and talking away

 

Say Cheese!!

 

MRSA Staph Infection

Brayden had a pretty good night last night and slept about 10 hours straight, other then the nurses waking him up from time to time.

This morning the peditricain doctor came in and she said that the expander looks much better and he is healing.  She said that got another read on Brayden's culture and he came back having MRSA Staph infection.  She said that this infection is caused by a strain of staph bacteria that's become resistant to the antibiotics commonly used to treat ordinary staph infections. And this one they are limited on what they can actually give him. A lot of antibiotics they give him, won't work for MRSA.  So what does this mean? Well they currently have him on clindamyoin antibotic and his body is responding to it, which it shouldn't be with this type of infection.

Today they are calling in a infection specialists to come in and look at Brayden and see what he has to say.  They have called Dr. Bauer this morning and he said this is not uncommon with expanders, and he agrees to have the specialist come in and look at Brayden.  The thing with Brayden, he's not a normal case because he has these expanders in.  If he was a normal case he would have been sent home already, but they want to make sure he is better and that we can save these expanders and finish this round.

They are also waiting on another fluid culture that they did on Friday to see what the reading on that is and once they get the results on that, they will decide what is next.  The doctor did say he is getting closer to getting home soon, which is GREAT news!

Staph infection for Brayden

Today was a better day for Brayden, he is talking more and more and becoming his happy self again.  This morning when Dr. Workman came in she looked at his expander and she said that his expander overall looks better then it did the day before.  So that is great news! The middle area and the left area and still purple/dark red.  We need to continue to watch it because that area has been stressed and should recover as things improve.

Some of the skin color is coming back and the red it less then it has been

 

View from Brayden's hospital room.....when airplanes fly by, Brayden points and says airplanes

 

 

After Dr. Workman came this afternoon, another doctor came in to talk about Brayden's results from the fluid they pulled 2 days ago.  It came back positive for staph infection.  a type of bacteria. These bacteria can live harmlessly on many skin surfaces. But when the skin is punctured or broken for any reason, staph bacteria can enter the wound and cause an infection. The doctor thinks he could have gotten this from our weekly fills, since every week we have been opening the port with the needle.  But then again, it is hard to tell how he got it.  Staph infection can be scary, so we are happy they caught it and now they can get Brayden on the right antibiotic to fight this out of his body. 

 

When are we breaking out of this place, hmmm not anytime soon.  The doctor now, knows what type of iv antibiotic to put Brayden on to treat this.  Then they have to make sure it's going the job.  Once they get that all worked out, they will put him on an oral antibiotic for the rest of the time these expanders are in.  They don't want to risk anything else happening to Brayden.  I do feel better now that they know what he has, so they can treat it and Brayden can start to get better. 

 

Today they had a children's play, Charlotte Web's.  The moment the nurse unhooked Brayden, his face lite up and he was so excited to leave this room.  He was laughing at the kids as he watched the play, made me feel so much better seeing him smile and laugh again.  After the play, I decided we would go outside for a bit to get some fresh air.  I put Brayden in a red wagon they have here and oh my, he loved it! He kept saying choo choo, choo choo! It was great to see him happy again! Melts my heart. 

 

Now I just need him to fight this staph infection, so we can go home.  Tomorrow the doctors will be around to see how he is doing and I guess we will just take it one day at a time right now.  Thank you everyone for all your support, means the world to us!

Benefits of staying at a great hospital

All I can say is wow....I am so impressed with this hospital.  First of all it's a 2 minute drive from my house and 2nd of all they have a children's unit.  He's at Banner Desert Hospital.  They have been nothing but nice to us and everyone loves learning about Brayden's nevus, since most of them have never heard of it before or seen in. 

Brayden is improving which is good.  Today he is talking more again, eating and playing again.  So why are we still here?  Well the expander is still red. The overall redness is going away but the middle and the left side are red still and kind of look like it is starting to bruise :(  boo!

This afternoon Dr. Workman came in and she said the expander looks a little worse then it did this morning, dang it :(  But she said they did run test on the fluid they pulled out of the port yesterday and it came back ok.  So that was good news.  She managed to pull 3 ml of fluid out around the port.  She is hoping that will help speed up the process to recovery.  I guess we have to take 1 day at a time and it looks like we better get comfortable here, because we are not leaving anytime soon. 

Here's some recent pictures of his expanders

 

 

 

After Dr. Workman pulled some fluid off the port.  They brought Brayden to a room filled with brand new toys and Brayden got to pick out anything he wanted! So of course he went with the 14 piece dinosaur set.  After that, they were so nice and opened up the playroom, just for Brayden! He played for 45 minutes and so excited to be free for awhile.  He was a little off balance, so Geoffrey kept 2 steps behind him in case he would fall.

 

Shortly after, a nurse came in and brought me so information about Southwest airlines and how they have a medical grant for flying.  She told me it wouldn't hurt to look into it and she gave me some prices for flying Allegiant air.  I thought wow, that is so nice of her to think of us.  And for Brayden they gave him a bag full of goodies and a mokey build-a-bear! And his favorite, stickers! He was so happy after that.

 

Brayden playing with cars in the playroom

Say Cheese Brayden!!

 

Loves cars!

He decided the monkey would love to wear some stickers

 

Tonight, Brayden got to face time his nevus buddy Joshua! How cool is that?! They have a good time talking to each other and Brayden was even laughing and waving bye bye! Josh and his sister Katie, even sang Brayden a few songs.  So fun to see Brayden interact with his friends and happy they live now a days with the technology that we have!

 

Now lets just hope and pray tonight is a better night and tomorrow, his expander shows more improvements

 

 

Wish this turtle speed of healing would speed up for my brave heart

Brayden is slowly doing better, but like I said slowly.  We have been in the hospital since Wednesday and we could be in here for a few more days. 

Dr. Workman, came in yesterday and she was able to get 5 ml of fluid out around the port.  Dr. Bauer was happy about this because that will help with the healing process. 

Yesterday he did eat 3 slices of pizza and some oreos.  Which is great! And he even wanted out of the bed.  He laid on daddy for awhile. 

 

Last night, Geoffrey went home to get some sleep, so I stayed with him.  He was wide awake till about 1 am and he got up 4 times last night, crying for awhile.  So needless to say, I didn't get much sleep, with his crying and the nurse coming in and out all night long. 

 

This morning I met Dr. Workman for the 1st time.  She was the doctor that seen Brayden in the ER.  I asked her if she has ever heard of nevus and she said yes, I was so surprised because most doctors have never seen or heard of this before.  And this is such a small world because she interviewed with Dr. Bauer and was going to work under him?! She said he is such an amazing talented doctor and he is so gifted in what he does.  She decided to go a different route and she does hand surgery and cleft pallet.  She has been phoning Dr. Bauer and they have been talking back and forth.  This makes me feel so much better that Brayden is in good hands here with a doctor that can relate to him and also one that knows Dr. Bauer!

 

When she checked Brayden this morning, she noticed more fluid around the port.  She said she will be in this afternoon to get some of that fluid out 

 

I emailed Dr. Bauer and I asked him, should we pack our bags for Chicago?! And he responded and said. you are in great hands with Dr. Workman and she is telling me that he looks better from Tuesday and he is improving each day.  He said it takes awhile for the body to get rid of this infection and he feels like Brayden will be just fine.  He wants to keep Brayden in the hospital until he is better and the redness in the expander is gone.  After he gets out, he will keep him on an antibiotic until our surgery date, Nov. 15th. 

 

So that is good to hear, that they think Brayden is improving and we just have to take each day at a time.  As of right now, we are hanging tight here and not going home anytime soon. 

 

I did notice the hospital has a play area and if Brayden is up for it, he will be playing later on today.  All night, he was asking for his shoes, he wants his shoes so he can go home.  Poor baby is ready to split this joint.

 

Brayden was a very spoiled little boy yesterday, so lucky to have sooooo many people support him. Means a lot to us!

 

Geoffrey's sweet co-workers Jessica & Karen sent this to him

 

 

Cars from Grandma & Grandpa Vauble

 

Dinosaur from his buddy Hannah!

 

Teddy Bear and balloon from Makenna, Holli & Brandon

 

 

Today Brayden also had 2 visitors, Destiny came buy and brought him a book and he loved it! He was pointing and talking to her about the book.  Also Stephanie, came by and brought him a smoothie from Jamaba Juice, what a nice surprise! He loves smoothies and this will feel good on his throat.  Oh not sure if I mentioned it or not, but he did test positive from strep. 

 

Here's an update of his expander, still red but slowly getting better