Brayden's Journey

Tuesday, September 27, 2011

Stitches are out!

Today was finally the day, to get Brayden's stitches out.....he hated wearing that ace wrap for the past 2 1/2 weeks.  Poor little guy would get so hot with the ace wrap.  Dr. Price ( who is Brayden's dermatologist) and Kellie, kindly offered to remove Brayden's stitches for us.  I was happy knowing Brayden would be in good hands. 

Geoffrey had to work today, so that left me taking him alone.  I packed his diaper bag with plenty of treats and his DVD player.  To remove the stitches took an hour, since he had over a hundred of them.  Brayden was such a GOOD boy and he just leaned forward and ate his gold fish snacks and watch Mickey Mouse on his dvd player.  He didn't even cry, just at the end he wanted me to pick up him, but other then that he was PERFECT!

Brayden has been through so much and everything that he goes through, just amazes me how strong he is.  I am super happy that things went good today and his stitches look great and I think it helped that he was in good hands with Dr. Price and Kellie, they are both great!

Now Brayden has a break, well until next Wednesday, Oct. 5th. He will go to Phoenix Children's Hospital for his 2nd round of laser treatments.  He will be put under and surgery last around a hour.  They will be zapping all his satellite spots.  Please keep him in your prayers, since he will be going under for this surgery.

Brayden is growing up to fast, can't believe he will be 11 months on Saturday.  He has been "army crawling" for the past few months and Sunday he crawled for the 1st time.  I was so excited I was clapping my hands and he sits up and claps his hands as well.  It was so cute! He has also become a dancer, when he hears music playing or a song come on, he will wave his hands in the air and if he's standing up, he will bounce up and down. So fun to see him grow and learn new things.

For those of you that don't know, October is cookbook month, if you haven't bought your cookbook yet, we still have plenty left and thank you for all the support to everyone who has already bought one.


Wednesday, September 21, 2011

TC Challenge: Chasing for the Cure

One of Geoffrey's co-workers at T.C. Eggington's, Katie Dempsey reached out to Geoffrey and I last week with an idea that she has.  She was trying to think of ways to help us raise money for Brayden's medical expenses as well as raise awareness for Congenital Melanocytic Nevi. 

Katie came up with this great idea.....she calls it the TC Challenge: Chasing the Cure.  In honor of Brayden and his tough fight for overcoming Congenital Melanocytic Nevi. She is getting a team together to run the half marathon in the P.F. Chang's  Rock and Roll Marathon on January 15th, 2012.  

This is what Katie has to say about the event, "Team members’ goals include fundraising by selling 10 cookbooks and raising the awareness level of Congenital Melanocytic Nevi. Thanks for your support and common interest in having a ...positive impact on the lives of young children battling this disease." 

When I first read this that Katie came up with this idea, I started crying, it means the world to us that we have so many people who support Brayden and want to help out in any way that they can.  Knowing we have such amazing support makes this process a lot easier on us.  

So now the question is, who can join our team? Anyone who wants to help support Brayden on the TC Challenge: Chasing the Cure. It will be a fun event and especially since we will be doing this with friends and family.  

Now most of you may know, I am not a runner, I love to workout and also love to walk.  I don't know if I will be able to run this half marathon but what I do know I will make it across that finish line even if I walk the whole thing in honor of my son.  He is a strong little boy and after everything he has been through already this past 10 months and everything that he will have to deal with later on in life, I will finish this for him.  Everyday when I look at him, I'm amazed at how strong he is and it only makes me stronger.

Please let me know if any of you have questions about this event.

Tuesday, September 20, 2011

Drain tubes are out !

Last Friday, Geoffrey and Kate took Brayden to his pediatrician to get his drain tubes pulled out.  Last time when I was in Iowa with him in July, Steph Bellcock came over to pull them out and all you do it snip the thread and gently pull out the tubes at the same time and your done.

Well on Friday it wasn't this easy for Brayden.  His pediatrician is a older lady and I guess she's never done this before (which we could have taken them out at home by ourselves, but we felt better going to a doctor) and she really didn't know what she was doing, she had the tweezers out and she was pulling Brayden's skin and his hair on his nevus and Brayden was screaming and she did one at a time to make it worst. So long story short, we are looking for a new pediatrician because we don't feel comfortable with the one we have.  We have a hard time understanding her since she is Chinese and it makes things difficult.  We are glad that is over with and so is Brayden, he did not like those tubes in.

Friday night he had his 1st bath in a week and he loved it! Now we just have to keep a ace wrap on him for another week or 2.  Next week his hundreds of stitches will come out, this will not be a fun day for Brayden or for us.  Poor little guy will have to sit still while they take these out and I imagine it will take well over an hour.  Geoffrey & I will be taking him to Dr. Price and she has been kind enough to offer to take them out.

Dr. Price is Brayden's dermatologist doctor and she is always willing to help out.  Which is great to have her. Brayden will have his 2nd laser treatment at Phoenix Children's  Hospital on Oct. 5th with Dr. Price.  We will know the day before what time he will be going in for that.

On a good note Brayden's stitches are healing up good and healing.  No holes or infection, which is great! He just wants to play, play and play....he still has no teeth and he is 10 1/2 months and he just army crawls where ever he goes.  He has started to pull him self up and walk around the furniture now, won't be long until he's a walking. 

Brayden did start a new thing since he got back from Chicago, he only wants Geoffrey, if Geoffrey is around.  He will cry and cry until Geoffrey picks him up and once he's in daddy's arm he smiles and gives off this laugh, like ha....I'm with dad now.  Even if Geoffrey is holding him, I will reach out for Brayden and say come here, and Brayden looks at me and shakes his head no and latches on to Geoffrey for dear life.  It's funny but wrong....I swear when he was in Chicago, they gave him so daddy drug ;)

Brayden is being so strong throughout all of  this and everyday he amazes me with his strength. It helps Geoffrey and I out, knowing that he is so strong, that we can also be strong for him.  I know we couldn't get through all of this without all the love and support from everyone!

Tuesday, September 13, 2011

Brayden means brave...and yes, he is Brave!

Today I remembered what the meaning of Brayden means, it is brave and it had me thinking how his name fits him perfectly.  That our Brayden is indeed brave, he is so strong and I can't believe when I picked them up from the airport on Sunday, he acted like nothing happened and that he didn't just have surgery 2 days prior.  Just amazes me how strong this little boy is and how he hardly complains. 

Yesterday we had a good day, I finally got the news I have been wanting to hear....Brayden's laser is being covered by insurance!!! We are so happy that they finally approved it.  Now that means that he can continue on with his laser treatments on all his satelite spots.  We were waiting for Phoenix Children's Hospital to get the new laser and now they got it, so we think Brayden will have his 2nd laser treatment next month sometime.  He will need 4-5 rounds of laser  .

We are enjoying our time with Kate in town, tomorrow we are going to Sedona for the day and then we will stay in Flagstaff.  Thursday morning we will be going to the Grand Canyon.  Which will be good for Brayden because this way, he will be in his car seat and the stroller, that way he doesn't want to crawl every where.  Brayden has to keep it easy for 3 weeks.  He will get his tubes taken out on Friday, which will be good.  Then he can finally have a bath again!

We booked Brayden's 2nd round of surgery with Dr. Bauer in Chicago yesterday as well.  Brayden will be going for surgery on Feb 2nd (which is Kate's birthday) to get two expanders put in the middle of his back and he will get them taken out on April 23rd. 

Brayden with his bubbles, before the infection started

 Before when he was only 2 months old                    
After his 1st round of tissue expanders

 Right side, those are his drainage tubes he has to keep in for 10 days

 Left side

Sunday, September 11, 2011

Round 1 done....expanders out! Took it like a Super Hero!!

Round 1 is done now! Geoffrey and Brayden arrived in Chicago Thursday afternoon and my grandparents, Bob & Betty meet them in Chicago and 15 minutes after they arrived, Kate (Geoffrey's mom) came from South Africa.  We were so happy that Brayden had such good support, even though I couldn't go with them, I was happy other family could be.

That night they went out for some Chicago pizza and they called it a early night since Brayden had surgery bright and early at 7 am on Friday.  They had to be at the hospital at 6am and surgery lasted for about 3 hours.  Of course, I was a nervous wreck being away from my baby....this is not how I wanted it, but Geoffrey and I can't afford for both of us to take time off work, buy 2 plane tickets for Chicago.  So we are lucky that we had my Grandparents and Kate for support this time.  I know Geoffrey couldn't have done this alone. 

Dr. Bauer was happy about the amount of nevus he removed, he got a hand size removed.  Dr. Bauer said surgery went good and that his skin that he got stretched was good, healthy skin.  Which is good news since he had that infection on the left expander. 

Dr. Bauer also said that Brayden will need to more rounds of surgery...which means 4 more surgeries in Chicago.  Hopefully by the time Brayden is 2 we will be nevus FREE!

Brayden did so good after surgery, he is such a tough brave little boy, with all of this going on, he's still full of smiles.  It makes me realize, how we all stress over silly things in life and things like this is happening to my son and he still remains happy. 

Brayden, Kate & Geoffrey stayed the night in the hospital Friday night and he did pretty good, got some pain meds about every 6 hours.  Also they have to change his drain tubes every 4 hours. This is draining the extra blood/fluids out of him right now for the next week. 

Friday night, he slept pretty good and Saturday morning, it was time to leave the hospital.  As they were leaving the nurse was saying bye to Brayden and he let out a huge smile as they walked out of his room, it was almost like he was thinking, finally...I'm free and out of here! Everyone thought it was super funny! 

That say they drove downtown to see some of Chicago and went out for dinner that night.  They were all tired last night and they called it a early night. 

Today, my grandparents drove back to Iowa, we are so lucky they came on such a short notice.  Kate, Geoffrey and Brayden flew back.  Only bad thing was Kate was on a earlier flight so she couldn't fly with them.  So my friend Dita and I picked her up and took her out for lunch for Mexican food...then it was time to pick up the boys. 

It was so good to see Brayden again and he looked so skinny without his "bubbles".....when he got home, he just wants to crawl and he acts like he didn't have surgery 2 days ago.  It amazes me how strong he really is! Brayden will have a ace wrap around him for 3 weeks and at that time he will get all his stitches removed, which is a lot!

Brayden will let his skin heal for 4 months now and back to Chicago late Jan for his next rounds of surgery to get 2 expanders put in.  Only bad thing about travelling in Jan, is all the snow. 

Thank you everyone who was praying for my little boy, this means the world to us that we have so much support.  Also thank you everyone who had bought a cookbook and donated money.  I also want to thank my mommy group for those who want to help out.  We are so lucky to have such good family & friends!

This is a before picture

This is after his 1st round

As the hospital with daddy in my super hero cape!

Reading a book before surgery

Poor baby, looks like a zoo animal ;)

He really hated these arm restraints

Bob & Betty came to support Brayden!

Granny Kate came all the way from South Africa, she left on the next flight just to be with Brayden for his emergency she is in AZ with us for 13 happy to have her here with us

Tuesday, September 6, 2011

Bad luck continues, off to Chicago on Thursday for surgery on Friday :(

We have had a rough past few days and when I think it will some how get better, it hasn't.  Well last night, I couldn't sleep, I just knew things were getting worse and when Brayden woke up, I picked him up and rocked him and I couldn't stop crying.  I could sense something was wrong. 

Well shortly after he got up, luckily my good friend Melissa who is a nurse was here and she helped change his dressing.  Well as soon as we opened the gauze, what do you know...the hole has gotten bigger since the night before, almost twice as big.  Aww, why is this happening to Brayden?!

I took pictures and emailed them over to Dr. Bauer right away.  Mim, his nurse called me and said everything will be fine and we will just have to keep gauze on it and ace wrap.  And it will begin to heal and that we should still be able to expand that side. OK, good...I was happy with hearing that.  I told her I would go to his pediatrician so she can look at it.  And his dr looked at it and she didn't think it was that bad.

Well then I was driving to work, I felt better knowing that Brayden was going to get through all of this.  Next thing you know, Mim called me and told me that Dr. Bauer got out of surgery and he looked at Brayden's pictures that I sent him earlier that morning and that he has good news, the good news is that we did get a lot of skin stretched and that he should get a lot more nevus removed then we think.  And the bad news is that he is worried that the stitches will only continue to open and that hold will get larger and if we don't do emergency surgery on Friday, the expander could fall out on it's on.  Which is not good.  They told me they want Brayden to fly out Thursday and surgery is Friday to remove both expanders.  Brayden was suppose to have his expanders in until October 10th. 

I understand why Dr. Bauer is worried and I have to trust his judgement since he is the top doctor in the world for this.  It's just hard that we now have more added stress and that we have to figure out flights, where to stay, and who will be in Chicago with Geoffrey and Brayden since my parents are in Florida right now on vacation.

Well luckily we got the flight changed, thanks to Pam who donated the flight for us, she was willing to help right away.  The next thing I did was call my grandparents and they said they are willing to help us and go to Chicago to be with Geoffrey and Brayden.  That made me feel better knowing we are getting support.  I hate it that I can't go with Geoffrey, but my work won't let me have the time off :(   Next thing we did was my dad booked us a place to stay.

Since Kate was going to come for Brayden's surgery that was suppose to be in October, I emailed her to phone us when she got up, she called and she said that she would call the travel agent and see what flight she can get on in order to be at surgery on Friday for Brayden.  Wow, everything is starting to work out and I'm not as stressed now. 

On a good note Destiny and Demi came over tonight to cook us dinner, they also brought Brayden 2 teddy bears and a balloon.  Also Kristy came over for a visit....So nice that we have great friends around for support when we need them.

Now, we are busy packing and getting things ready before Geoffrey and Brayden fly out on Thursday morning at 8:20 am. 

Thank you everyone for your prayers and for thinking of Brayden, he is so strong and I know he will get through this, it's just a set back but we will move forward and someday, when this is all over, we will be greatful that we did this for him and all this stress will be worth it

This is Brayden yesterday, he loves to make a mess when he eats ;)

This is his hole from this was 2 holes

 This is his expander now, it became 1 large hole and yes, that is the expander that you see :(

As you can see Brayden is a happy little guy even though all of this is going on.  He was so happy that his friend Demi came over to play with him

Monday, September 5, 2011

Hole in his stitches :(

Last night Brayden slept through the night again, which is good....this morning when I got him up, he had alittle bit of drainage that soaked through the gauze and his pj's. 

This morning when I did his dressing change, he screamed.  Well when I got the gauze removed I look at his stitches and I could see why he was so upset.  Now some of the stitches came off and he has a little hole...oh great, so now what?!

I took pictures and e-mailed Dr. Bauer right away and what an amazing doctor he is to respond so fast on a Holiday weekend! He said for the present time we need to stay with the gauze dressing and the ace wrap.  But tomorrow he wants me to call his office and they may want me to switch to a tegoderm dressing.  That way it will help support the wound edges and see if the surrounding area will heal and get sturdier.

He also said that the right expander is doing fine, so he wants to go slow and see if we can get things settled enough to get more fills in.  He also wants use to take him to his pediatrician tomorrow and have them do a swab of the drainage that way we know what it is and make sure the medicine will work to fight this. On a positive note, Brayden wants to move around like I have been trying to keep him from crawling
too much, don't want to open that wound more. 

Here is a picture of the open area...hope it heals soon!!!

Sunday, September 4, 2011

Not a fun Sunday morning in the Phillipson house

Brayden slept from 10 pm till 8:30 this morning and normally I can hear his cry from time to time, but last night...I didn't hear a peep.  So of course I couldn't sleep and I kept checking on him to make sure he was breathing...with everything going on, I was freaked out something else was going to go wrong...well it did :(

When Brayden woke up, I got him out of his crib and it was soaked! At first I thought it was pee, then it was too much for that, then I was thinking, oh great...the expander broke! I got him on his changing table and took off his pj's and what do you know, it's coming from the stitches.  A solid drip of pus was running out.  I was so freaked out ,I didn't know what to do.  So hard when I was home by myself, I pretty much went in to a panic and was thinking the worst possible things have happened.  And I was upset with myself, that I didn't take him to the hospital sooner. 

Geoffrey was at work all day, so it was up to me to be strong for Brayden.  I didn't want to call Geoffrey at work and worry him, so I thought I better deal with this on my own.

Well thank goodness, I have Dr. Bauer on speed dial and he picked up as soon as I called.  He told me the pus is the infection and his body is just trying to drain out the infection.  He told me to get some gauze and a wrap and warp the wound.  I asked him if this was common, and he said yes, this happens from time to time and we need to let the rest of it drain out and get him on a different antibiotic.  So he said he would call that in for us. 

I asked him what the worst case scenario is and he said that it won't heal and we will have to fly to Chicago to remove his expander early.  But he said not to worry about that and that the worst is past us now.  He said Brayden's temp is back to normal, the infection is coming out and he is acting like him self again.  So now we just need that area to drain and heal.  Hmm, how do I not worry and think of the worst case scenario now :(  

Dr. Bauer is super nice and told me to hang in and everything will be ok.  So now, I got to trust in him, that everything will be ok. 

After I talked to him, of course I burst in to tears....I had to get a wrap for him and I was home do I go to the store with his pus dripping out? Luckily I am good friends with my neighbor Noel, so I went over to her house in a panic and she came right over to help me.  If I didn't have anyone to help me, I would have lost it.  So hard not having any family here during this hard time, but we are so greatful for close friends to be here for us and support us. 

After Noel went to the store and got the wrap, she helped me put it on.  We had a hard time trying to figure out how to wrap it with his 2 huge expanders.  But we finally figured it out.  Brayden has been acting more like his normal self today, which it makes this much easier on me.  But I'm not going to lie...I was so scared when I picked him up from his crib seeing him laying in that. 

Now, we have to wait for his body to heal...and that means no fill for awhile, hopefull only a week.  But we will see how things turn out.  Please pray for my little boy and that he has a fast recovery from this.

Think this calls for a glass of wine for this momma tonight ;)

Saturday, September 3, 2011

Brayden started getting fussy on Wed during the day.  He was following Geoffrey every where he went and he just wanted to be held.  That night he got a temp of 103.2......we gave him a cold bath and it brought it down some, but not a lot.

Thursday Geoffrey and I both had to work, my good friend Wendi was watching him so she took him to the doctor for us.  He still had high temp and he had a sore throat.  So Dr. Bauer put him on an antibiotic right away and also some medicine for his throat. Since his throat hurt him, he didn't want to eat.  Which is not like him. 

That night, Brayden started fussing at 3 am, he was burning up and his temp was up to 104.3 rectal.  I of course started crying and didn't know what to do.  Times like this, it is really hard on Geoffrey and I not to have any family here.  I gave him some ibuprofen and within 30 minutes it went down a degree....phew.

Friday he was still fussy, not his happy little self and he and that night we noticed that his expander was a little red and blotchy.  Then we also noticed that on that left expander, he has white pus coming out of the stitches.  We took pictures and emailed then to Dr. Bauer right away.

On a good note, his temp is down which Dr. Bauer said is good and that means the antibotics are working, but now we need to worry about his expander and the infection.  He told us to set everything up like we are doing a fill and numb the port.  But in stead of putting saline in the port, pull back and see if we can get some of that nasty infection out.  Well when we did that, we just got some clear liquid.  So we don't know if it's the saline or what.  So we emailed Dr. Bauer and waiting to hear back.

Brayden did take a 3.5 hr nap today, so that was good and he started eating some food tonight again for the 1st time in 3 days.  He is slowly doing better, but we have to keep an eye on that let expander and the stitches.

If it doesn't heal soon, we might have to take him to the hospital. Or switch his medicine that he is on. 

As always, please pray for my little boy.  He is such a strong boy, and going through so much....we need some good luck to come our way!

On a good note, Geoffrey's mom is coming to Chicago for Brayden's surgery in October, then they will spend a few days touring Chicago....then go to Iowa to visit my family.  Then Kate will fly back to Arizona and spend time with the 3 of us and see where we live.  We are so excited for her to come!

Here is a picture of the left expander.  You can see that the stitches look red.  This was Friay night

This picture is from Saturday night, you can see that the stitches look worse, they are more red and more white pus :(