June 10, 3013

I'm going to try and post at least pictures every day, so I don't get behind...I hate catching up.  So let me start with today...

5:00 am- leave hotel in West Monroe to be in Dallas by 10:00...for those Duck Dynasty fans that saw the episode where the guys where having a donut eating contest, let me answer that question for you: yes, the donuts are THAT good.  Especially at 5:00 am when they are still warm!

10:00 am-  stop in OshKosh to get Clayton some short sleeve button ups because t-shirts won't fit over his "halo".

10:30 am- hello Whataburger!

11:00 am- at Texas Scottish Rite Hospital for Children, go straight to x-ray where another child taunts Clayton with his toy ambulance.  Literally taunts him, getting right in our faces to the point we finally moved.  Then back to attempt good x-rays...oh the joy!

11:30 am- x-rays..check, go to Admissions.

11:50 am- go to Media for "before" pictures of Clayton's back.  Taking his shirt off didn't go over to well.

12:10 pm- draw Labs where before we could get to the last vial, Clayton jerks the needle out of his arm.

12:30 pm- waiting to meet with Dr. Sucato, during which time we talk to someone with pharmacy.

12:45 pm- Dr. Sucato's nurse checks in on us.

12:50 pm- a research nurse comes in asking if we will permit Clayton to be a part of their study.  Following his progress, taking measurements, etc.

1:00 pm- Our local urologist, Dr. Terry calls, says the stent in Clayton's ureter should come out as soon as possible, he knows a pediatric urologist here and wants us to consult with him so he can get it out while we are here.

1:15 pm- a fellow comes in and we review and sign consents.

1:30 pm- We finally see Dr. Sucato.  Thankfully Clayton is being playful and not screaming!

2:00 pm- head over to pharmacy to check in.

2:30 pm- head over to anesthesia...wait...wait

2:50 pm- talk with post op nurses about tomorrow.

3:15 pm- talk with Anesthesia

3:50 pm-  Our room! Finally!  Thank you God we don't have to share with anyone!

4:00 pm- nurse reviewing medical info and asking questions, George runs to grab us a quick bite.

4:15 pm- OT comes in

4:20 pm - Nutritionist comes in

4:25 pm- Child life comes in

4:30 pm- down to Orthotics.  Clayton loved the wheelchair and was very curious about his "halo". I hope that is the only time I will ever have to say Clayton got fitted for a Halo.  We also sized him for a wheelchair and a walker.

5:30 pm- back to room, check plans with nurse

6:00 pm- We all leave to check into the Ronald.

7:00 pm- back to hospital.

7:30 pm- George gets Clayton to sleep and I leave and get lost in Whole Foods silently walking around thinking to myself, "Whole Foods, I love you.  I want to spend my life with you."

Showers and sleep follow, then we get to wake up tomorrow and Clayton's procedure is at noon.  We are expecting a headache and some grouchiness.  Let him rest Wednesday and adjust to halo and start traction Thursday.

hell.of.a.day.

June 9, 2013

The last few weeks I've been focusing on most anything I could cling to other than Clayton's back. Documentaries on the organic-whole foods movement, building a house, watching Ally McBeal...Why? Because today we are driving to Dallas to get started on therapy for Clayton's back and I have been doing everything I could to not think much about it before now;  obviously that included not blogging about it.  

Clayton and I left the house this morning not knowing when we will get to come home; George is with us of course, but he'll be home in a week.  We are expecting to be in Dallas at least three months, hoping and praying it only ends up having to be for two and fearful it might end up being four.  Being away from home is causing me some anxiety, as is the idea of being by myself in Dallas while living in the hospital with Clayton.  But I am also excited about it.  I think though the thing that has really been worrying me is the idea of this halo traction therapy not working as well as we hope.  I'm excited at the idea of this therapy working and bringing him a better quality of life and possible relief, but what if it doesn't work as hoped?  

No matter what, this really couldn't wait any longer. George and I have noticed Clayton's back getting worse.  For the past year or two we have watched the kyphosis worsen significantly, but we are now seeing the scoliosis getting worse.  To clarify, think of scoliosis as an east to west curvature and the kyphosis as a north to south curvature.  Our last measurement had the kyphosis at roughly 92 degrees and the scoliosis at 48 degrees.

I'm very sensitive about Clayton's back.  Very.  I have cursed at my mother before for bringing him in public with his shirt tucked in accentuating his "hump".  In my head I was always protecting him, but what I realized is that really I was protecting myself.  People are mean and if someone said something about Clayton's back, he wouldn't know.  But I would know...and that is a problem.  I have a serious case of Sarah Palin's mama bear complex and if someone goes after my cub, well...  On our return trip from our last NYC trip, there was a woman in the airport staring at Clayton.  She then started whispering to her friends who proceeded to look at Clayton.  Had she not gotten up and moved after seeing me witness their behavior, I might have knocked her buck teeth through her skull.  Sounds classy right?  Well people snickering or passing judgement on a child who has no control over the obstacles he has been given to endure isn't real classy either.   Anyhow, despite my sensitivity, I'll come back and post some pictures for what we can only hope will turn into one hec of a before and after!

May 28, 2013...sorry to post this so late

Never ceases to amaze me how time can get away from you.  One year ago, we were being Medflighted to NYC to get Clayton's hemorrhagic cystitis under control.  It just feels like yesterday.  Thank God it wasn't.

I mentioned that when we got back from NYC, I got sick, but about the time I got over it, Clayton got sick.  The doctor said his turned into an ear infection and he's been on an antibiotic for nearly a week, so we've just been tending to Clayton around our house.  Right now I am awake at 4 a.m. Writing this and listening to him breath.  He had some somewhat questionable breathing noises that scared me.  They might have been nothing, but I gave him his oral steroid and albuterol breathing treatment just in case and I have the nebulizer on standby.  It is the first time I have done that since starting his inhaled steroids in January.  I hope and pray that after his back we have even less reason to worry!

So, about his back...it's less than two weeks away!  It's sneaking up on me.    I promise I will come back and do a tell-all about what we know about the traction.

We also went to Birmingham this past Tuesday and saw his urologist at UAB; it was the first time we've seen him since Clayton got cancer.  We were checking with him about Clayton's urine retention and whether or not he had anything to offer for treating it.  Lastly, we were inquiring about the hydro nephrosis on Clayton's kidney from his last few scans.  The good news is that he is not worried about the hydonephrosis, he said that what he sees on the scans is what he would expect and as long as the function remains fine, he is not worried about it.  The bad news is that he expects that hydonephrosis because of the way Clayton's kidney started out.  As he put it, Clayton's surgery on that kidney as an infant was "buying us time".  I guess George and I had gotten comfortable enough to foolishly think maybe that kidney would last Clayton forever.  

The only unresolved issue to tend to now is the stent in Clayton's ureter.  Now, we have to check with our local urologist for that one, partly because the urologist in Birmingham said he wasn't going to "be the putz that took it out" if our beloved docs in NYC hadn't really wanted it out- our B'ham doc didn't seem to connect that our NYC docs told us to check with our local urologist about the stent. Luckily, our local urologist is friendly with Dr. La Quaglia, so I have the utmost confidence they can figure it out.  But, since we have to leave for Texas soon, who knows when we can get this done!