Brayden's Journey

Wednesday, May 30, 2012

4th laser surgery done

Today Brayden went to the Phoenix Children's hospital bright and early at 6:30 am for his 4th laser surgery.  Can't believe it's been over a year now that we have started the laser process.  Every time he gets the laser done, it lightens his satellite spots. Right now the spots are super dark and some even blistered, once they heal, I will post before and after pictures.

This morning, they asked Geoffrey to come back and bring Brayden to the room. Little did Geoffrey know, it was the room where they would be putting the gas mask on Brayden and putting him under.  What a hard thing for a parent to see, hard enough knowing they have to be put under, let alone watch it happen.  Geoffrey said Brayden was not happy, he was screaming, so they did it quickly so he would be out, then all of a sudden his eyes rolled back and his arm went limp and he was fast asleep. 

Dr. Price was Brayden's doctor again today, she did such a great job and we are so lucky to have her.  She said that the laser surgery went well and that she upped the wattage of the laser again this time to make it more intense.  She also said that Brayden has around 130 satellite spots and she did over 160 zaps of the laser.  Hard to believe that he has 130 spots, since some of them are so light now and some are so small, I hardly even notice them anymore.

When Brayden got up, he wasn't too happy.  They had to give him pain meds, since he seemed like he was in a lot of pain.  He never needed pain meds the previous 3 surgeries, but the older he gets the more aware he is.  They also gave him some anti-nausea medicine to make sure he doesn't get sick on the car ride home.  Once he was up, happy and took down some juice he was on his way home. 

Now we just have to keep him on antibiotics for 5 days and also put cream on all his spots and also he has to be out of the sun for a few weeks until he heals. We will do this again in 6 or 8 weeks.  Hopefully we only have a few more rounds of laser left.

Night before laser surgery, say cheese! This is what he does when you ask him to see his teeth

1st thing he does at the play area at the hospital, play with the cars

Really need to talk to someone about the purple gown, good thing he had his hair done so he looks like a boy ;)

hmm deciding which toy to go after now

Think I will continue to play with the cars

Monday, May 28, 2012

Sitches are out and holes are still healing

These past 2 weeks have been a crazy one in the Phillipson household, my friend Melissa who is a nurse came over and we tried to take Brayden stitches out.  He was not happy and screaming bloody murder, she got the middle of his back taken out, but had to stop because some of them we so far into the skin, there is no way she could have gotten them out when he moving around and crying.

Thank goodness for Dr. Price, I emailed her and she squeezed him in that week to get them out.  Only bad thing, he had to be put under in order to get them out.  Hate putting him under so much, but didn't have a choice.  Those stitches had to come out.

Then we notice on the right side that he was getting 2 small holes, so that means we have to do 3 dressing changes a day and do wet to dry changes. One of the holes is already healing up and the other one is looking better but not healed yet.  I can't wait for these to fully heal and we can stop the dressing changes and get that ace wrap off and my boy can enjoy the rest of his summer and go swimming again.  I have been dying to take him to a splash pad to play, he has never been, but have to wait until he heals before we do that. 

Since he had another ear problem, looks like he will be getting tubes in his ears when he goes to Chicago for his next surgery on August 30th.  Hope this will help him not get sick as much as he does.

While we are dealing with the holes, Brayden got sick.  He got fluid in his ears, high temp, runny nose and sore throat.  Poor Brayden can't catch a break.  So on to more medication he goes.  He was sick for over a week, didn't want to play or eat.  Just lay on the couch and watch Monster's Inc, over and over again.  He also got Geoffrey and I sick and we have been sick for over a week now, so hopefully in a few days, we will all be healthy again.

Since Brayden was sick, when he went to the doctor they weighed him, he weighed 30 lbs before surgery and now he is 25 lbs.  Can't believe those expanders weighed 5 lbs. Brayden is one strong little boy carrying around all that extra weight. 

Before surgery Brayden was taking a few steps, here and there. And once those 5 lbs bubbles came out, he was fully walking! Finally at 18 months! When I picked him up at the airport when he flew back to Phoenix with my sister and Makenna, he came up walking to me, where did my little baby go?! Now I have a walking toddler, that keeps me on my toes!

Please keep Brayden in your prayers, he has his 4th laser surgery on Wednesday morning.  He will go to the hospital early that morning and the surgery is less then an hour, then he will be discharged and go home to rest. 

After round #2 surgery

Right side that had the 2 holes

Joshua & Brayden nevus butt-buddies


Monday, May 7, 2012

Happy 30th to me, never a dull moment when you have a child though

Today is my 30th birthday and I am overly tired, why you may ask, could it be that I am now in my 30's? Ha...could be, but I think the real reason would be the past 2 nights since Brayden returned from Iowa. He has kept me up all night.  Poor little guy is not happy, he keeps crying, itching his back and can't seem to get comfortable.

My mom said he was fussy since Thursday and we didn't know what it was, I thought maybe teething, but when I changed his diaper when he got home and looked at his stitches I could see why he was so unhappy. His stitches are all red along the edges and on the edge of the flaps you can see some discharge. Now are are doing daily dressing changes and keeping the area moist, this way the area starts to heal.  We are also suppose to give Brayden a bath daily, but how do you do that when he screams bloody murder when you try to put him in?! I just pray that this heals soon and Brayden starts to feel better, then he sleeps through the night again and also gives his momma a break ;)

He is also suppose to be on "quiet play" don't know how were suppose to keep him on that, especially since he has his cousin her to play with him.  I couldn't believe the difference in Brayden when he returned home after 13 days, he is now walking, running and spinning in circles! Yesterday I was exhausted chasing after him all day, now I will have my hands full.  Despite all of this going on, he acts like any other toddler, he amazes me with his strength and I am so proud to be his momma! Even the nights when he keeps me up, I wouldn't trade any of this for anything.  He is the best birthday present I could ever ask for.

I also want to thank my family for taking such good care of him, I know dressing changes and changing tubes is never fun to do, but my family amazes me with all the support they have given us with Brayden and all his medical needs. 

We are also hoping to remove his stitches on Friday as long as it starts to heal within the next few days, my amazing nurse friend Melissa offered to take them out, what a brave soul she is! I am very lucky to have such great support.  Now I pray the next post, is a better picture of Brayden's back healing and not getting worse.