Rough week

I hate when I go so long that I don't know where to start. I should start with the passing of sweet Sammy Knight...but I can't seem to get the words into print. When I heard of Sammy's passing...(his amazing Momma sent me a text in the middle of the night, worried I would hear or read about it from someone else) it hurt so badly that it took me a while to come to terms with it...I had to wake Mark up and read the text to him numerous times before it fully sunk in. It hurt for many reasons, some to painful to get into....but what hurt the most was how this amazing, full of life inspiration could no longer be on this earth...how was that possible?! It made me go back to that dark place where I find so much anger at God...

As the weekend moved on I found myself trying so hard to get coverage for the kids so I could get myself to Houston for Sammy's funeral. I so badly wanted to be there to support Missy. On Sunday am Kyle woke up in the early morning vomiting badly with a slight temp. We really thought he had some sort of stomach flu and we started watching him closely. When his temp hit 102.6 on Sunday afternoon I realized that we had to hit the hospital. We were admitted and cultures were drawn. At this point he was in bad shape and it was becoming clear that this wasn't just a stomach bug, although I kept telling myself it could be just viral. I think in my heart I knew we had a line infection. When the cultures came back positive on Monday I don't think any of us were surprised. Because Kyle was needing more oxygen to maintain his sats we did a chest x ray...I could tell when the team came in something was up. His lungs looked ok on the x ray but what was troubling everyone was that it looked like his bowels were once again herniated (I'm not even sure that is a word) into his esophagus. I can say when I heard this I felt like vomiting. Clearly realizing that this would once again complicate his next surgery, not only do we have to fix that pocket that's forming in his esophagus and try to reverse the way his anatomy is plus also place the J tube, but now we have to fix ANOTHER hernia. They also told us that they really are convinced this is all mito and that we need to get to Columbus and figure some things out. We have our dates for Columbus and we will be meeting with surgery, gi and the mito specialist there. His surgery is scheduled for mid October which means we will be in Columbus for his birthday and probably Halloween. I'm not sure Mark or I have actually processed all this yet...we are so focused on clearing his line that we haven't totally come to terms with everything.

I know this is choppy and written terribly...I'm exhausted...worried and heart sick that Kyle will have to undergo another major surgery so far from home.

XOX
K

the little things

Since Kyle has started school I find myself overwhelmed numerous times a day with the little things....

~Kyle trying so hard to dress himself in the morning because he is so excited about school. (with a TPN backpack on this can be difficult)
~Kyle making sure I packed his "lunch" so he can eat with the other kids at school
~Kyle pacing in front of the door waiting to hit the bus...then RUNNING down the driveway to meet the bus
~Kyle turning around and telling me he doesn't need me to walk him up the steps of the bus.....big sigh.
~Kyle going to school....making friends.....bringing me art projects, having music class, gym class, and did I mention making friends...his class is filled with amazing kids, who like Kyle for Kyle...
~Kyle coming thru the door and when I ask him how his day was....he says "awesome"

We have been battling a nasty bug that has now officially hit every member of our family, with Kyle of course it's always so much worse. He's tired but so incredibly happy....
Still no date from Columbus, it's starting to make me twitch a little...we need that date. He needs some relief...it's like a ticking time bomb waiting to go off....

We are starting to plan Kyle's 6th birthday party...I say this every single year....I didn't think sometimes he would see 1....so ever year after that I am so incredibly grateful for....we have much to celebrate.

XOXO
K

Kyle

What a day...I find myself again at a loss for words. I wonder sometimes where the strength comes from. How he picks himself up everyday and no matter how tough our night was he soars above it... I have to say I was worried, at 4 am this morning as I held the bucket to his face I thought...there is no way he's going to be able to get on that bus. But he woke up with a smile and literally jumped out of bed. It wasn't the smoothest morning...Kyle of course struggled to the point of I was silently praying (yes..me praying) that he could just get on the bus and make it to school without vomiting! He did! I got lucky and was invited into his class to talk about Kyle...it was so neat to be able to see the kids in his class and answer their questions!

He only made it 2 hours today....it was brutally hot and that's a bad thing for him. But he's still glowing, still talking about how awesome his teacher is, and keeps asking when he can go back!! Thanks Nurse Merydeth for making all this possible....thanks for helping me let go just a little and thanks for loving Kyle.

We are not having much success with his feeds, trying a new formula tomorrow...really hoping we see a difference. For now though the hope is still alive.

XO

Kate