Quick update

Early Saturday morning the surgeons came in to tell me that Kyle's line grew fungi. It was like a kick in the teeth, fungi is one of those bugs that you really don't want, it's very hard to clear from lines and it can make kids incredibly sick. We started anti fungal meds immediately and we moved on with our day. I won't get in to the specifics of how I found out that we are now pulling Kyle's line this morning or my thoughts on that because we'd be here all day and I don't have much time. When they pull the line they will place two normal IV's and then we start to hope and pray he doesn't blow those (which we know he will) before tomorrow am... He blows those lines so quickly. I told the dr last night I'm not torturing him all day today so we need a better plan then re-sticking him 100 times....he's a terrible stick, he's had so many IV's, lines, and blood draws that there isn't much left. As for surgery on Tuesday we have been told to not be very hopeful about that...which I'm trying so hard not to focus on today. I can't change any of this I just need to get us thru it.

Will update later tonight.
XO
Kate

dragging my feet

I am..I can't even believe I'm about to have to type this let alone it be a reality. Yesterday we came in early for Kyle's upper UGI and swallow study. Honestly I knew it was going to be a disaster..I mean really a swallow study on a kid who doesn't drink by mouth?! We got registered, got checked in and made our way to flouro....started the test, and then sat there and watched as they injected dye into his g tube and waited....and waited...and waited as it sat there and didn't move. We waited and watched as the barium made it's way up....not down the way it's supposed to go. We watched it snake it's way up into the loops of bowel that are now in Kyle's esophagus....I could literally feel myself start to sweat. The the dr says ok I need him to drink....yah ok so they give me a syringe and into his mouth I go, at this point feeling like the worst mother on the planet...he starts to scream and choke but does swallow....and we wait and watch again as the barium pools at the bottom of his esophagus and goes no where. At this point the Dr says..get up and walk for 30 minutes and we can take another series of pictures...we then repeat this step 3 more times....and we watch as the barium continues to go no where.

After all this Kyle is exhausted and just wants to get to his room to rest, we go through admitting and get to our room. About 20 minutes into this process Kyle starts to complain that he's cold, which is always a signal that a fever is coming, I start to think that's impossible, I mean really....there is no way this could be happening, but it is and within another 20 minutes he hits 102.6. Blood cultures are drawn, a full viral workup is done and we get a chest x ray. The surgeon comes in and explains his plan for the next day and says....well clearly surgery depends on if we can break the fever and he stays fever free until surgery time. Fast forward to 4 am today and back up to 102 we go.....5 am...98.6. Confusion is setting in and we can't figure out where the fever is coming from and if they will pull the plug for sure or not. At 1 today the surgeon comes in and says it's to risky to perform this major of a surgery with a potential of anything already going wrong in his body. Which we totally agree with, but it stings...big time. They can't get him back on the schedule until Tuesday...so here we sit. We haven't even had time to figure out the logistics of how we are going to do this, I can't even think about how long this will keep me from Alex and Jack.....we haven't even really told him what's going on yet....

XO
K

She's 9....

I swear she knows more then me...seriously. Sometimes she looks at me and I think how can she only be 9, is that possible?! I didn't have any idea 9 years ago when they said....your having a girl how important her birth order would be.
At 9 she can..

Turn oxygen on and put a nasal cannula on her brother
Burp a g tube
hold a puke bucket (this may not seem like a big deal but when your 9 it is..)
disconnect Kyle's g tube from his ferrell bag
give a breathing treatment
take a diaper off
take TPN off an IV pole
untangle numerous lines and tubes
protect...love...and respect her little brother
Say good bye to half her family for who knows how long and only let a few tears slide out....

She is amazing, she loves and hurts just like so many other children...but the level of that love and hurt is so much different.
I worry sometimes if we are doing her right, if we give her enough, if we show her how amazing we know her to be....and then tonight as we skype and I see her sweet face cheer that her brother lost his first tooth tonight, I realize that somewhere, somehow we are doing right by her.

As for Kyle, he goes inpatient tomorrow morning and we start a full day of testing....surgery is still scheduled for Wednesday. Nervous...petrified....it's a very big day for all of us...

XOXO
Kate

jumbled

This is one of those post where I start and I'm not sure If I'll finish it or not....

My brain is fired, my heart hurts and I wonder why?

Our little Kyle is still inpatient, the good news is that his 24 hour cultures are negative. The bad is that his temp is literally all over the place. We have had to realize and accept the vomiting and constant reflux. We know we have no chance of getting that better until we hit Columbus. At this point all we are doing here is maintaining Kyle, trying to put out fires and get him safely to Columbus is 2 weeks...we learned yesterday that on top of everything else part of his left lung is collapsed because of the hernia in his esophagus. That's probably why he is requiring the extra oxygen and breathing is so hard on him. I have that Mommy gut...the one that tells me we are missing something, but I don't know what?! If the cultures stay negative by tomorrow night, we are hoping to come home by Wednesday....the hard part is that if any fever comes back, we will have to head right back in.
Amazing....he just keeps going. His strength is inspiring and uplifting. He continues to teach me so much.
I sit here and I can't control the emotions that I feel, I wonder how much we can all hurt, how many times I can watch him in pain or be scared and not be able to fix that....every time I almost feel a little of my sanity slip away, I'm his Momma....we should be able to fix the boo boos...what happens when you can't...how do cope with that?

XO
Kate

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