Texas in Springtime aka Bluebonnets

The Button

So, last Wednesday, Clark had surgery to install a gastrostomy feeding tube--from here forward called the g-button.  The surgery was a success and took around 45 minutes.  Admittedly, we had been so focused on the "button decision" that we forgot all about recovery from surgery and what a beast it can be.  This time--it definitely was.

Clark's pain was hard to control, he also came out of recovery still on supplemental oxygen (a first in all of his 6 surgeries).  Finally, after versed, morphine, toradol & a tylenol suppository--pain was under control.  All-in-all, that took about 6 hours.  During all of this, there was a lot of flailing around and tensing up.  Those movements led to his stitches being ripped out.  The surgeon said this was a 1st in all of his 12 years of doing the surgery.  I said to him "Yes...I'd like you to meet Clark Kelley, the .01%."

Clark stayed on oxygen for 12 hours after surgery to keep his sats up.  This was particularly troubling to me, as he hasn't been on oxygen for almost 2 years, since he was about 37 weeks gestational age (2+ months actual).  As you can imagine, we didn't sleep at all the 1st night after surgery.  Pulling an all-nighter really made me realize my age...ugh.

On to the pictures:

Mama, Clark & Aunt Jan

Playing with toys in pre-op

Lauren, the awesome Child Life specialist who came to play with Clark

Wearing his non-slip duck feet with his "fall precaution" bracelet

Mama makes everything better

Going off to the OR with Lauren & dog

He was really unhappy about having to leave Daddy behind

Button + stitches halfway out

Puppy love

Finally found a comfortable position

Thank you Apple for keeping the guys entertained

Tape-job, post suture removal.  Ugh.

Finally, after 36 hours, able to drink something while having his vitals taken.

Happy boy, despite the circumstances.

Apple wins again.

A New Day

Today was a much better day.  We met with the surgeon and he agreed to do the surgery for the button without doing a fundoplication.  That was very good news to hear.  The surgery is scheduled for March 7, next Wednesday.  If you would, please be in prayer for Clark and Dr. Josephs' surgical team at Dell Children's.  This feeding tube will be a good thing for him, but I am certain that having to go back into the hospital and having surgery will be very traumatic.  The less pain he's in and the faster he heals, the better.

I don't have to be strong enough. Part 2

The pH probe was a huge fail.  Just like the NG tube.  The probe coiled in his mouth the 1st try.  The 2nd and 3rd try yielded more screaming and sputtering blood everywhere.  It was traumatic for all of us.  And..I'm pretty sure that I took it harder this time than ever before, seeing as how I was against the test in the 1st place.  Lesson learned (again): go with your gut.  Never forget that I said that, just repeat it...go with your gut.

Ugh.  I debated on even writing this post seeing as how every muscle in my body is killing me and my head is pounding...I'm still emotionally and physically wound up from all of today's goings-on.  I knew if I wrote this that it would be very emotionally charged and very one-sided.  There's my disclaimer.

I'm anti-pH Probe and anti-fundo.  That's just the way it is.  Now, to get the GI to understand.

So...  Tomorrow..  We meet with the surgeon.  This all seems a little out of order to me, and I'm not quite sure why we're already meeting the surgeon.   But, we're meeting him anyway.  In my mind, this will do one of two things: 1) shed some light on the situation or 2) throw another wrench in it.  For everyone's sake, I hope that we can just set a date for the feeding tube installation & let that be that.  No more fundo talk, no more probing, let's just get down to business.

No joke guys, if there were ever a time that we needed your prayers, it's now--on this topic.  GI, feeding tube, Clark's health, my sanity...all of that.  All of it.  Please, please, please & thank you.  I need clarity for tomorrow, for that appointment with the surgeon.  That's all, we just need your prayers.

Back to today for a second..  I really thought I was desensitized to this medical stuff.  I've held Clark down for blood draws, i.v.'s, shots, NG tube attempts, eye exams using metal speculums;  I watched him nearly die several times in the NICU.  I truly thought I was hardened enough to handle just about anything.  But today broke me.  I don't think I've got it in me anymore to put him through these things.  It's gotten to the point where it's too much. 

I’m broken
Down to nothing
But I’m still holding on to the one thing:
You are God
And You are strong when I am weak.
 

I can do all things through Christ who gives me strength,
  & I don’t have to be strong enough.

I don't have to be strong enough.

Although it may come across clearly in this blog, I can't recall ever specifically blogging about my faith.  

I have never considered myself "religious".  That may seem confusing but all it really means is that 

my relationship with God is far above all of the traditions & things that go along with modern-day religions.  

I'm simply a Christian, my brother and Savior is Christ, and God is my heavenly Father.  People, situations, 

and even "church" can fail, God never does.  "I will never leave you, or forsake you." Hebrews 13:5b.  

The world, people, my body & life, in general, have all failed me over the years.  God never has.

In light of Clark's upcoming procedures and surgeries, I've been feeling overwhelmed, especially considering where he's already been--all the things he's already endured in his short, sweet life.  This isn't surprising because I have a very bad habit of trying to carry everything myself.  Praying for myself has never been my forté.  But I always reach a breaking point.

Last night was that point.  Monday, Clark is going inpatient for an unpleasant procedure, the pH probe I mentioned in the last post.  Shortly after that (no scheduled date yet) he'll be having yet another surgery.  This will be Clark's 6th.  When I think about this surgery, and all of the other ones he's endured--it just reminds me (again) that the body fails us. 

Walking into that hospital on the day of his surgery, getting him dressed up in "hospital clothes", walking him down the all-too-short hall to the point where I have to hand him over to the surgical team and watch him realize what's going on, and seeing the tears start to roll down his little face...it's just a burden I can't bear.  It's too heavy.

On that note, I present to you one of my favorite verses in the Bible:  Philippians 4:13.

"I can do all things through Christ, who gives me strength."

Many of you who are familiar with this verse realized, right off the bat, that I rephrased it.  You won't find the words exactly like that in any translation.  But, it does get the point of the verse across in a strong way.  I can't take credit for it though.  Those words, which originate in the Bible, were put into a song called Strong Enough.  It happens to be one of my most favorite songs & yeah, I'm the one singing it in my car going down the road.

All of that aside, one of the purposes of this post was to share the lyrics of that song with you.  You may have heard it before, especially if you make a habit of listening to KLOVE or other stations with Christian music.  Personally, it's the only station I listen to...they sold me with their "positive, encouraging" slogan ;)  Without further ado, I leave you with the music & lyrics.  Trust me--it's worth 4 minutes of your life to listen.

Inpatient & Surgery Consult

Our recent visit with the gastroenterologist confirmed our fears, Clark hasn't gained an ounce in over 3 months.  The next step in this journey (battle, however you'd like to look at it) is a gastric feeding tube, otherwise known as a "g button" or just "button".  It's a tube that is placed in his stomach that gives us feeding access directly through his stomach, bypassing his mouth.

This is an example of a button

In a sense, provided everything goes smoothly, this will be a blessing to us.  We will be able to supply Clark with all of the calories he needs to grow and catch up; and he will still be able to eat whatever he'd like by mouth.  On the other hand, it is just one more bump/detour in the road to "normalcy".  Right now I'm at the crossroads of relief and considerable anxiety over the situation.  The button placement will require surgery and a several-day hospital stay while he recovers & while we learn to feed him by tube.  We won't know until next week what the surgery date will be.

Next Monday, he will be admitted for a pH Probe test.  This is where they drop a tube down his nose (I say good luck with that) to test for reflux or GERD, in technical terms.  Adults generally refer to this as "heartburn".  The purpose of testing for reflux is to determine if he will need a Nissen fundoplication, in addition to installing the button.  A fundoplication is where the upper part of the stomach is cut and wrapped around the lower part of the esophagus, with the intent of preventing reflux.  We, at all costs, would like to avoid a fundo.

I am 99% sure that Clark does not have reflux issues, as he has no outward signs of having it.  We're praying intensely that a fundo is not indicated in all of this, it is a very serious and irreversible procedure that is extremely invasive.  So, if you're praying for us, please focus on that.  It is likely that even if it is indicated, I will refuse it and opt to treat the reflux with medication.  But, I'm not anticipating there will be a reflux issue.

He has his surgery consultation next Tuesday and we will be able to learn more about everything then.  Until then, we will continue to pray and hope that Clark will eat and gain, even though the surgery is a certainty at this point.  We appreciate all of your prayers, thoughts & kindness.  Also, you've been so loving towards us and we can't tell you how much that means.