Mommy brain

When you have a sick child you do what needs to be done, I can say at times I don't think about what I'm actually doing until after the fact, things that no mother should ever have to do to their child. When Kyle was in PICU a few weeks ago and the PICU dr was explaining some things to me I totally lost it, which if you know me well is actually unusual, I have gotten pretty good at stuffing these emotions and waiting until Mark and I are alone to lose it....but as I explained to the dr....my mommy brain is tired....my medical brain understands the things that need to be done to keep Kyle with us, but my Mommy brain aches and hurts. For years I really felt like I could hold on to those emotions, the Mommy emotions and shut them off....lately that seems impossible. Everything seems to hurt, and when it's not hurting I'm angry or sad.

We are still at home, and for that I'm incredibly grateful. Kyle's blood numbers are still dropping which isn't good...we are waiting for some OR time to go in and look and make sure there are no obvious reasons as to why the numbers are dropping. We are still messing with med dosages and hoping we can find the right combination to control the vomiting better and to be able to start feeds again, so far thats a no go. Still waiting on Columbus.....it's hard to wait with Kindergarten looming over us....my panic over that is in full force. Although Kyle is beyond excited.... :)

I need to address some questions we have gotten over the last few weeks. Many have asked about a transplant for Kyle.....I should say that we are in no way looking at that right now, we have a long way to go before we get there, many more options to try....while it may seem like we are at the end we aren't...a transplant is the end card one we hope to never go to. For Kyle he would need a very in depth and complicated transplant. His entire bowel, colon and stomach are all affected. We have been told the likely hood of him surviving that are not high and so for us we will keep fighting and trying until they tell us there is no hope. We know that at any day we could lose Kyle, that is something that we live with daily...we try very hard to not let it rule our lives but it's hard. We are working with the palliative care team at the hospital which has been helpful so far....we are doing everything we can to make Kyle's life as happy and normal as possible. We do as much as we can at home and are so lucky that his dr's trust us to care for him in the capacity that we do. I want to stress that Kyle is stable and safe, but he does have a life threatening condition and that has been a difficult thing to swallow.

I'll admit, I'm struggling. I don't want to go back to Columbus, it petrifies me. What we'll hear, being away from Alex and Jack and our family. I struggle daily with how to keep explaining to the other kids why Mommy is always away taking care of their brother....as amazing as the kids are this is horribly hard on them to. We won't leave Columbus until Kyle is better, at this point we need the best of the best.

I don't know how to thank people any more...I say thank you but I feel like it's not enough, the kindness that is shown to our entire family is overwhelming and so appreciated. It's been hard to admit we need help..

XO
Kate

Still here

I was quietly prodded today to give an update...which I have wanted to do for days but just haven't had the heart to do it We are still the same, at home and trying to stay here, are days are very up and down and I find myself so incredibly grateful for the small moments of time that Kyle feels well and is happy...

We are moving ahead with Columbus again and are waiting for a date from them to come back.

Instead of a big update please just remember to keep our Kyle close to your hearts..please.

XO
Kate

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