Brayden's Journey

Monday, October 29, 2012

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.

Wednesday, October 24, 2012

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

Sunday, October 14, 2012

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.


Sunday, October 7, 2012

Fill 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

Tuesday, October 2, 2012

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!

Monday, October 1, 2012

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.