Friday, July 26, 2013

Why It Is Important: McNair Kids Camp Fund 2013

Wednesday was hard....physically & emotionally.

It reminded me why getting the kids to Camp Korey is so vital. Why having something to look forward to, and creating memories to hang onto, is so important.
Disney Channel & Iphone make it bearable

Madison and I started the day before the sun came up. We were on the road by 5am, and at our hospital by 6. By 7 she was in pre-op, where finding a vein willing to cooperate took two sticks, digging, and two different people to make it happen.

Madison made sure to get the name of the medic-turned-IV-placer so she could plug her into her phone, for next time.

Yes, my 16 year old daughter has a list of blood takers and IV placers for every hospital and lab we need to go to. Knowing when we find one that can make it happen, as painlessly as possible, we ask for them again.

There will always be the need.

By 7:45, she was doped up on Versed and rolling down the hall, away from me. I watched and marveled how "old hat" this is for her. How she casually (albeit a little drunkenly) chats with the nurses wheeling her away, and how, without trepidation she tells me she will see me in a bit. Then I sighed, because ever so often it hits me....this isn't "normal"...and she is amazing, brave, and incredibly forgiving to us all for what she must endure at our hands.

As I walked to the all too familiar waiting room, and went through the routine of telling (the same nice lady I see almost every time) my child's name, I found myself looking for some spark of recognition from her. She seems to be one of the few that doesn't recognize me on sight. But then, she hasn't met my children...

They are always in an operating room when I am there.

They are the spark people need to recall that last encounter...they are the reasons to remember. I smile to myself thinking of the impact they have, and how they always have something to say or do that makes people smile.

I follow my usual routine of running to Starbucks down the hall, grabbing (more) coffee and something to eat, and willing it to take at least a few minutes so I am not left with my thoughts, and the less than comfortable chairs, for too long. I wander out in the hall, hoping to see someone I know (which happens far too frequently, considering I am standing in a hospital)...someone who can fill a few more of the minutes I have to wait. I wander for a few minutes, then hurry back to the waiting room, worried I might take too long and miss the doctor. This time, I see the surgeon as he hurries down the hall to join in on the procedure, already in progress in the OR. I know his part won't take long, so I make my way back and sit down.

Sometimes, the plans we make going in are not always how  it pans out.

The plan was to:
1. Put her under to scope her esophagus and stomach to see how our control of reflux was going, and to make sure we didn't see any signs of issues from the iron she takes, or yeast, due to all the antibiotics she is on.
2. To remove the long feeding tube that was placed after her surgery in April, that we had been unable to remove here at home. We tried twice, with the second attempt leading to another abscess.
3. To have our surgeon fully examine the g-tube tract for signs of another fistula, or an explanation for the latest abscess.
And 4. To replace the long g-tube with what she has always had, called a "button" g-tube.

Madi was desperate to get that long tube out and her old one back in. Desperate!! The long one hangs down a ways, doesn't clamp (leading to messes when trying to hook up to her feeding pump), is more obvious, and in general, just isn't what she wants. In this life, she has to put up with enough, so we do all we can to make it as unobtrusive as possible.

How things actually went:
1. We didn't have the anesthesiologist we were told we would have. Not a huge deal, but I have gotten used to not having to explain everything and convince them we should do what we know works. I hadn't prepped for the discussion, and with that, I did not advocate for Madison as well as I should have.
2. While the scope went as planned, there was a new finding. A nodule was found that hasn't been seen before, but we are pretty sure it's something that happens sometimes when you have been on PPI's (reflux meds) for too long. Lord knows she has, and we talked again about the need to do surgery to hopefully stop the reflux and allow us to get off the medication. Biopsies were done, so we will know more next week.
3. The surgeons inspection of the g-tube tract was revealing. While not another fistula, there is a fissure (tear) running from the stomach to about halfway up the tract. Barring us allowing the g-tube tract to close, something we cannot do, the healing process is going to take time. How much is anyone's guess.
4. This fissure means we could not switch her back to her old g-tube type, and another long tube was placed. The button type would have put enough pressure on the stomach side of the tube, it would cause more tearing and there is a real risk of the balloon that holds it in place moving into the tract and causing more damage.

I knew immediately that Madison was going to be upset with this change in plans. It was, after all, the ONLY part that she cared about.  My feeling that she would wake up from anesthesia and immediately pat her stomach to feel the new tube, and be confused when it wasn't there, apparently is exactly as it went.

I had to chuckle at our doctors a little...our GI and surgeon are friends, and according to our GI, they apparently had a bit of a fight over Miss Madison. GI was all ready to place the button g-tube when the surgeon came in and promptly told him no way. GI insisted he was going to do what his patient wanted....surgeon said no....GI insisted...surgeon threatened to walk out...and they were at an impasse. Once the surgeon found the fissure, even GI couldn't disagree that the button would cause more problems, but he wanted me to make sure Madi knew he fought for her, and was bullied by our surgeon....LOL!

As expected, Madi was a mess when I got back to recovery and could explain what happened. I haven't seen her that sad in a long time. And my heart broke. And there was not a thing I could do to make it better.

And then....we talked about camp. Little by little, as we were discharged and made our way home, she smiled a little more, and distracted herself with camp plans. The Dr. Pepper with "good ice" from Sonic helped too.

What happened, in the grand scheme of things, was not a big deal. She has done the long tube for 3 months, and put up with it like a champ, and she can do it again. This was one of those quality of life moments....she needed the things to go back to the way they were... she needed this "win".  She was disappointed, and sad, and faced with a set back she didn't need.

She also proceeded to do what Madi does so amazingly well....she quickly started getting "over it".

My day wasn't done, oh no!!

A drive home, a switch out of children, and I was on my way back with Chance. Wednesday was the day we met with our pain doctor to try and get him some relief and a plan. For reasons we still don't understand, Chance has been in a decline since January, that has included a significant decrease in physical stamina, constant muscle pain, a week long episode in April of severe muscle pain, and, as time has gone on and his body has been stressed, Neuro issues, GI problems, and an increase in fatigue.

After consulting with everyone I can think of, making changes in physical therapy routines, and testing what we could think to test, he & I were finally faced with the need to start treating the symptoms and hoping for some relief.

The appointment went well, and we have a plan that we hope might work. It won't fix whatever the problem is exactly, but at this point, pain relief is a huge need.

Distraction is too. Camp Korey is an awesome distraction, coming exactly when he needs it. Coming exactly when I need it too.

Thursday, my inadequate advocating for Madison came back to bite us on the butt, when she woke with every muscle in her body (even her tongue) in severe pain!! It was a long day, with lots of phone calls and worry, but we finally were able to determine that she was given something she hadn't had before, and that is likely causing this problem. Once we figured that out, pain meds were given, and by evening she was in much better shape.

Days like these, they are hard, but they remind us to hang on even tighter to those things that mean so much to us. We are so very grateful for each and everyone one of them.

We are steadily making our way to this goal....with your help!! We thank you, from the bottom of our hearts, for your support.

I have extended the deadline on the fundraiser to Sunday, and the raffle drawing will take place Monday morning. If you feel led, we are still in desperate need of your help at

We fly out tomorrow evening, deliver Chance & Madi to Camp Korey on Sunday, and Abby on Monday for the start of another amazing, life changing week. All thanks to you.

Thank you.

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