Brayden's Journey

Friday, August 31, 2012

Long night for my little super hero

Last night was by far one of the worst nights we have had after surgery. Maybe it was because he slept so good during the day and he wasn't tired at night or maybe it was because he was in so much pain. He was up almost every hour and sometimes would cry for 45 min to an hour none stop. Tried giving him, toys, juice, anything I could think of and he didn't want anything but to cry out the pain.

Last night he did have some chocolate milk and cheese pizza. He wouldn't let me feed him but only his grandma Vauble.

This morning, he was not happy, with the nurses giving him medicine, changing his tubes and having to dress him. Right now he doesnt want to move, so if you touch him or move him, he cries. We got checked out of the hospital by 9 and we went straight to Dr. Bauer's office to visit Mim for his 1st dressing change. He was not happy and crying the whole time. I held him. My mom took some pictures of his back and showed me once the dressing change was all done and all I can say is WOW! The results of the advancement on the right side are amazing, I thought he would just get a little of the nevus off and he got most of that side all done. That is another reason why Brayden doesnt like to be touched that side is super sore for him. Think about it, they just lifted and pulled and cut off the nevus skin. Anyone would be in pain.

Mim also told us that everything looks great and that Dr. Bauer put in 130 cc's of saline in each expander. Which is a great start to this round.

We are now on our long 7 hour car drive to Iowa. We will stay till Wednesday and spend time with family and friends while Brayden recovers. \\

Now we have to stay on top of his medicine, change his tubes every 4 hours and change his dressing once a day.

He is sleeping in the car right now, which is great...he needs his rest.

Thank you everyone for your prayers and thinking about Brayden yesterday and today!

Thursday, August 30, 2012

Bryaden's 5th surgery in Chicago with Dr Bauer

Last night, Brayden and I were off to Chicago to meet my parents for his 5th surgery . Only problem, flight was delayed for 3 hours. Luckily Geoffrey stuck around the airport to keep Brayden entertained and they also wondered over to the gift shop where Brayden had to get a toy Southwest Airplane and car. Yes, should have been free since we waited 3 hours and not $18 for this little toy.

Once we got on the flight, Brayden was great and he slept for 2 hours, the rest of the flight he played with his new toy and talked away to people sitting next to him. He also played with the ipad for awhile. Which I love having that now, so many things for Brayden .

After we landed we called ahead to our favorite pizza place Lou Manalti's and they said they were closing, but they would go ahead ad stay open to make our pizza. Wow, so awesome they did that for us! We finally got back to the hotel at 11 pm, had to eat and give Brayden a bath and Grandpa and Grandma Vauble got him some news toys, so he was wide away playing until 1 am. We had to wake up at 5 am, so not much sleep for any of us last night.

I can't believe it's been over a year now that we start this nevus journey and I am so happy that we decided to remove Brayden's nevus, so far the results are amazing.

Dr. Bauer came in before surgery to talk to us about the game plan. 2 weeks ago, I emailed his pictures and he told me Brayden would be having 3 expanders in, 1 in his back and 1 in each thigh. When he looked at Brayden in person today, he said no change of plans, he's not going to put expanders in his thighs because the right thigh didn't need it, we would do an advancement or a butt lift to that side today. And the left side his lef isn't big enough. He told me he was going to put 2 expanders in his back again and he thinks with these results we get over the next 11 weeks, he wont need anymore expanders. That the next surgery would be an advancement and cleaning everything up. Well I really don't want to get y hopes up, anything can happen these next 11 weeks. We will take each day as it comes to us and things will work out the way it's meant to be. I trust Dr. Bauer and I know he is the best. So someday Brayden will be nevus free, will it be 6 months from now, a year from now, who knows but we are that much closer to making it possible.

When Brayden went back for his 5th surgery today, it was hard to see him go, but I knew he was in the best hands.

Brayden also got tubes put in his ears today, his ENT doctor came out to talk to me after she placed them in. She said everything went well and she is happy we put the tubes in, because his left ear drum was not looking good and she said he would always get ear infections on that side if we didn't get these tubes in. So I am happy we finally got them in, one less stress for us.

Next up it was Dr.Bauer's turn for surgery, it took him 1.5 hours and he said everything went great. Brayden did have fluid under his skin where his old expanders were and Dr. Bauer said it was easy for him in surgery to lift that skin up. He said everything went well and he was happy with the advancement he did on Brayden's right thigh. I can't wait to see that tomorrow morning when we go see Mim at Dr.Bauer's office for the 1st dressing change.

When I went to recovery, normally this is the hardest part, but this time, it wasn't Brayden was fast asleep. I waited in recovery for 1.5 hours with him and he never woke up. So they took us up to his room and he continued to sleep until 3. Once he finally woke up, he was crying pretty hard and the only thing he wanted was me and his 3 pacifiers. After a few hours, he finally wanted some apple juice and a banana and when I showed him gummy worms, he got so excited. So he ate a few of those. So I was happy he was eating so soon after surgery.

We even snuggled and watched a movie together this afternoon. He is so uncomfortable when the nurses come in and move him and he hates to take medicine.

We will stay the night in the hospital and tomorrow morning we will go to Dr. Bauer's office for his 1st dressing change before we start our 7 hour drive to Iowa.

I want to thank all of you for your love and support today, means the world to me that Brayden has so many people that love him and pray for him. He is such a tough little super hero and he is so brave!

We did sell a few cookbooks lately and we still have over 100 left, they would make great birthday, Christmas gifts for a friend or loved one :) Thank you to everyone that has already bought one and supported Brayden.

Well hoping we have a good night and tomorrow my little guy bounces back and starts to talk more and play. I know each day will get better and today is the worst, for him and for mommy and also daddy who is so far away. We did skype him today, so that was nice, but poor Brayden was crying the whole time :(

Now, I just ordered Brayden's favorite and guess what he falls asleep, he does need his sleep, so if he's hungry he will wake up.

Thursday, August 9, 2012

5th laser surgery

Yesterday super hero Brayden took on his 5th laser surgery.  Since surgery wasn't until 9:30, we were worried he would be fussy since he couldn't eat or drink anything but he did great. 

Each time Brayden gets the laser surgery, it lightens the pigments in his satelite spots.  I can really tell a difference when I compare were we started from.  We will hold off on another laser surgery until December since he has another round of expanders coming in.

Dr. Price was Brayden's doctor again for the laser surgery.  She said it went well and when they started with the laser they were at 40 and now they have increased the energy called fluence up to 75 this time.  She is very happy with his response to the laser. 

Normally when Brayden has laser surgery they just gas him to put him under but this time since the laser was at a higher number the anesthesiologist thought it would be a good idea to do a caudal block.  This way it would help manage Brayden's pain after the procedure. 

Normally when Brayden wakes up from surgery he is pretty thirsty, but this time he was so out of it.  Geoffrey took him home and he didn't want to eat or drink anything.  All he did was lay on the couch and sleep for 5.5 hours.  After his long nap, he got up and he ate a peanut butter sandwich and he was bouncing back to his same happy self.  Every time Brayden has surgery, he amazes me with his strength and he also makes me realize to not sweat the small things in life.  Life is too short and everyday we are faced with different problems and look at Brayden, he has now had 9 surgeries.  5 laser and 4 for tissue expanders and he is the happiest little guy I know.  He is only 1 year old and he makes me so proud to be his momma.

We still have 80 or so cookbooks left, if anyone would like one, please let me know or if your friends or family would like one or two :) Also if anyone has any ideas where I could sell them, let me know

Brayden trying to wake up from strong brave boy

So sleepy....he won't go anywhere without his doggy pacifier

Brayden enjoying his 1st real bubble bath, now this is my happy boy again! Day after surgery