home and exhausted

I haven't had two minutes to get on line...Kyle came home Saturday afternoon and it's been non-stop since then. But I did want to jump online and say that we are home and safe...trying very hard to get into a routine and once again find our new normal. I promise to be back soon with a full update on where Kyle stands and what our plan is...

But for now, please know how much we appreciate the love and prayers that have been sent our way...

XO
Kate

Day 23

Kyle seems to have finally recovered from the line infection, his new line is working well in his chest and tomorrow it will be tunneled and transferred into a central line. He is still vomiting and having belly pain but sadly it seems this is how it's going to be for now. That in itself is hard to process for us....we haven't really come to terms with what all this means for Kyle. Coming into this surgery we were so hopeful....now we feel worse than before. These last few weeks have been so horribly painful...yet I'm not sure either Mark or I have had two minutes to really think and absorb them.

It's very hard to think about what's to come....

Please keep Kyle once again in your heart and minds tomorrow am he will once again have to go under and be on the vent for the 4th time in 3 weeks...

XO
Kate

quick update from icu

I don't have alot of time but I wanted to update quickly. Kyle's temp went way up again last night and he had increased pain so we were moved back to the ICU. Kyle was intubated and given a CT scan to check for any leaks or other possible issues in his bowels. His CT scan was clear which is great news. But his blood cultures were positive for a blood infection which is not good. We have pulled his PICC line and placed 2 periferal lines in his legs (over 20 sticks to get 2 lines) We are concerned that the fevers are still high but he's being closely watched. We will update later tonight. I haven't slept since Friday night so while he's comfortable I'm going to try to rest a little.

As always thank you for loving our Kyle.

Xo
Kate

It's me

It's me God...yah the one who swore I would never ask you for another thing...the one that goes through my MIL and my Mom who are up there in heaven....the one who prays daily to those two incredible women, the one who basically begs them to turn something in Kyle's favor.

I am now pleading with you, in my head and in writing to please stop the madness....I don't understand any of this, can't begin to wrap my brain around 5 years of hospitals and pain and heartache. I know that I am grateful for Kyle and his fight, it's taught me more than I ever needed to know. But enough. Now we are dealing with a high fever and more pain....Kyle is beyond tired but yet still smiles and tries to be a 5 year old boy. God..you've made every and any point you have needed to make, we get that life is precious and short, that it should be valued and loved. We get that there is nothing we wouldn't do for any of our children, we get that our children love each other more deeply than anything I thought possible. We get that we need to respect and love others.

So I now ask you, pray to you that you give our Kyle a break, so that he can be 5 and go home and play with "his kids". Please.

XO
Kate

in and out

I find myself trying to slow my breathing down...I can hear myself in my head saying in and out, in and out...like if I don't I will hit the floor and not want to get up....things are ok here, nothing major happened today I think because things have been calmer I am starting to look back over the last two weeks and it seems so incredibly sad and hard for me. I try hard not to mince my words on here, it is my outlet the one place that I can be honest and open....but I haven't been able to truly put into the word what our Kyle has been going thru in the last 2 weeks...the words just are not there. There are moments of time that seem lost to me, like I have blocked them out...to painful to remember....I am trying to move past them and take it day by day, hour by hour like his dr's have told us to...but as a Mother that's hard...I think of the tomorrow's, I can't help myself. It's hard to live hour by hour...it's hard to not worry what's around the corner.

We have so far to go, but we are hoping to get home for at least a little bit of time....Mark and I have so much to figure out...choices to make....we will be going back to Columbus we do know that. As for timing that's all up to our Kyle's body...it's all on his schedule.

We as always are so incredibly grateful for being Kyle's parents....we didn't just get blessed with Kyle...we got blessed with Alex and Jack...and our family, and friends....and Kyle's incredible team of Dr's and nurses...who love our Kyle just as much as we do.

XO
K

the facts

~ Kyle is refluxing or vomiting every hour on the hour...sometimes as often as every 20 minutes.
~ His motility is in reverse right now (meaning instead of heading downstream it's heading up)
~We can get nothing into his g tube right now without him vomiting it up
~We are waiting for some direction from Columbus hoping to have that today
~We are beyond sad and have no idea what this means for our sweet boy
~Kyle is super at risk for aspiration into his lungs right now....major concern for us
~He is exhausted and very grumpy, won't acknowledge most people. We are very worried about his mental well being
~ This is all alot for us to handle, he's 5....he knows to much but not enough, that is a very hard combination
~We are all settled into the Children's Hospital and out of ICU! :) His room was completely decorated in Thomas stuff when we got here.....I have to say that the staff here is beyond amazing and take the most incredible care of all of us. If we have to be in the hospital I wouldn't want to be anywhere else.

I go from being incredibly sad to incredibly angry to incredibly grateful. My mind and body are so tired but I swear I'm so damn happy that we have made it thru the last 2 weeks I honestly questioned a few times if we would. But I tell you our Kyle's spirit and will are inspiring. He is beyond tough....


XO
Kate

still here

...in ICU that is. I don't even know where to start and I do feel bad for saying that I'm to tired, sad and frustrated to get in to the details...but I will soon...I just wanted you to know that we are still in ICU, that Kyle is stable and he is so brave and so strong. Nothing is going the way it was supposed to....it seems like something else goes wrong every day....it's hard to not get sad and discouraged....one of Kyle's nurses said to me today.....it's amazing your not bitter.....My response was one that I truly feel...how can we be bitter, we are still fighting, we are the lucky ones.

XO
Kate

update day 8 in ICU

I'm sitting next to Kyle who is for the moment sleeping so I'm trying to muster up the energy and the brain power to write an update.

The last few days have been beyond terrible, Kyle has been in horrible pain and his lungs have been really bad. Yesterday he was taken downstairs and they did some testing on his belly and a contrast study to make sure his new anatomy was still all hooked up correctly. The good news is that it is and that they saw no blockages.

The really bad news is that they put contrast into his belly and watched it empty out his belly, go down into his bowels and then go back up the other side all the way up his esophagus. Which was supposed to be impossible. This does explain the vomiting, the lungs and what we knew was reflux. They inserted a tube down into his esophagus that is now light suctioning all the bile out so that he 's not choking on it and aspirating it anymore. Since they did that he has been in alot less pain...which is wonderful but it leaves us with a very big problem. How do you fix that? We don't know....the options are not good and without getting into my heartache to much right now Mark and I are sick over this.

So for now we wait and we try to keep him comfortable and healing....his mental state is still not good but we are seeing little bits of our Kyle coming back to us. He will stay in the ICU until we can figure some more things out.

Please continue to keep Kyle in your thoughts and prayers....he is not out of the woods yet...

XO
K

update

I know that I need to update but I can't. I just need to say that Kyle is very stable and has been finally given the right combination of meds so that he can rest. We have been up straight since 11 pm last night and he is in desperate need of sleep. He was put under today for more testing and we don't have the full results. It was a horrible day for him and I just can't wrap my brain around all of this. I will update tomorrow after we fully understand everything.

Thank you...for loving our Kyle.
K