Friday, July 16, 2010

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 mommy brain is 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's hard to wait with Kindergarten looming over 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 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..


Thursday, July 8, 2010

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.