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

Hope

I had to wait two days to blog about Wednesday. If I didn't this post would have been filled with way to many emotions and I just couldn't go there. Now that we've had a buffer day I feel more level headed. Taking Kyle to the hospital for anything is hard on all of us....and by all of us I mean our entire family. Alex and Jack always have 100 questions and Alex always gets this look of fear on her face. For Mark and I anytime we have to watch our baby rolled into the OR and put to sleep it's beyond painful. We know that with Kyle nothing ever goes the way it's supposed to and we usually get some bad news during this process. I have to say Kyle was nervous this time, he asked us a few times if this was going to be like last time (his last major surgery) we reassured him that is wasn't that this would be quick but that he would wake up with a tube in his nose. The tube was super important and it would hopefully help us get his tpn hours down a little. I have to say he was totally cracking us up on the way to the OR, this kid knows the drill and was asking for the white sleepy medicine.

We expected 30-60 minutes of wait time, a quick scope and tube placement....after an hour we started to get nervous...once we hit 2 hours we knew there was a problem. His dr came out and the look on her face said it all.... The tube could not be placed it became dangerous to keep trying, his lugs were not happy and they had to re intubate him 3 times....steroids were given and breathing treatments started. His anatomy is to complicated and they couldn't get the tube far enough down. They also discovered a pocket located and attached next to his esophagus where spit and bile are pooling and this is why he's vomiting so much....

So where so we go from here, Monday we'll be admitted and Kyle will have a blood transfusion....he's not making the blood he needs and now is severely anemic. Next Friday we head back to the OR and a new team along with Kyle's GI dr will try again to get the tube inserted. They are promising nothing but we have to try again, Columbus needs this info to plan our trip there....if we can get feeds started this is major for us and for Kyle...if we can't....well we are not going there for now. We just aren't.

Kyle's had a fat lip and a bloody nose, vomiting alot and overall sad since Wednesday...We are trying so hard to keep him comfortable, happy, safe...I feel like we are failing him on all fronts. I can't go inside of him and fix his body.....it's horrible to be able to do nothing to bring comfort to your child.

This weekend we are just hanging as a family and trying to keep Kyle and the other kids surrounded with love. We still have hope. After a phone call with Kyle's dr late at night last week she said, are you giving up? You sound sad. I let her know I will NEVER give up on Kyle, never...but am I sad....yes. Very sad. But I still have HOPE, and I will have hope even after they tell me not to.
Kate

Balance of Life

I have written before about juggling one sick child and two healthy ones, it's a constant struggle to keep our family in tact while keeping Kyle safe and Alex and Jack stimulated. We spend ALOT of time at home....that's Kyle's safe zone, I have everything here I could possibly need for any crisis that he could have....and sadly his crisis can come on fast and violent. Sadly the other two kids alot of the time are home with us and while it's nice to keep us all together it can take a toll on them. Both Alex and Jack know nothing different then living life with their brother, Alex was only 3 when Kyle was born and Kyle was only 17 months when Jack came along. They never complain about it but when things come up and they get to go, they are so super excited. The amazing thing about when the kids are not together is that they are constantly calling to check on their brother and me.....this weekend M took the kids to the lake and Kyle and I stayed here to spend some time together...its been an amazing weekend for all of us. The kids and M are having a BLAST, and Kyle (while really not feeling well) has had his Mommy right beside him all weekend (if you know Kyle you know this would make him VERY happy) We have been working on some things that he will need to do to go to Kindergarten (his mother is still not ok with the whole K thing, but he's over the moon!) He's in full countdown mode for K...I'm so scared that his energy level will be so poor he won't make it but I have to let him try...it's not about me anymore, it's about letting him live life to the fullest as much as we can. That my friends is far easier said then done.

Last night Kyle came out into the kitchen and asked what I was making for dinner, since the kids weren't home I had made myself a bakes potato, so I told him I would split it with him....he climbed up to the table and started to cry....I asked what was wrong....and he said, Mommy I'm just sooo hungry. :( He wants to eat by mouth so badly.....it almost broke me....these are the things that are getting harder and harder for me to stomach.

I'll be back soon with updated pictures!
XO
K

Unreal

It's unreal that I've gone this long since updating....I guess it's good to know that if things were bad or we were in the hospital we would be updating more. Things are still the same...same issues, no word from Columbus yet. I know that there is alot to organize but we need a date...there is so much to figure out once we get date that I know my anxiety will be better once I get that date. Kyle is still having the same issues..although since last week he's been struggling with his lung issues and it's concerning. His iron levels are really low and it seems like he's losing blood from somewhere, we have given iron infusions and he's not getting the bump we need from it. His energy level is low and the anemia is clearly causing him some issues. We head back to MMC on the 18th for a scope (to try to find the source of the blood loss) and also to insert an NJ tube (which will make Kyle very angry when he wakes up and has that in his nose) the hope is that we can thread that down far enough into his new anatomy and we can try to feed him that way. This will give us a good look at what his bowel is now doing since his surgery. We can not feed thru the stomach but are so hoping we can if we can get the tube down far enough.

The last week was spent with amazing friends that traveled so far to see us! It was probably the best week we've had in years. I have to say that for weeks I hoped that Kyle would stay well enough to just get thru the week...he did amazing! He did far better then I could have hoped or expected! We were all spoiled rotten and I have to admit it felt really good! :)

Now it's back to reality and trying to get Kyle ready for Kindergarten...oh....that's a blog for a different day.

XOXO
K