Friday, February 12, 2010

overdue update

I think sometimes after bad appointments or bad days it's hard to put the feelings down in writing, like maybe somehow that's to much of a reality check...like what, writing it makes it real?! It has not been a good week, we are continuing to trend in the wrong direction...blood labs are moving in the wrong direction and his TPN (IV) infusion is now at 18 hours a day. For a 5 year old that is pretty upsetting...to the point of tears now. Basically after he's hooked up he can't play, he can't run, he can't move without us helping him. It is miserable...but it's where we have to be to keep him safe and at home. His body is craving nutrition and we can't seem to make that happen...cold hands, less peeing, pale, and all I can do is sit back and do what the dr's tell me...it's the absolute worst feeling in the world.
We leave for Columbus in 3 weeks...it can't come soon enough. I am usually pretty good at absorbing information and moving forward from it....we saw neurology on Wednesday..Kyle's tremors and tics are not getting better and actually are worse at times. The good news...it's not seizures...the bad news is that it's stress induced. That sweet child's body is so stressed that this is one way for his brain to deal with it...can I say it made me want to vomit. There are things that trigger it that make it worse..changing the dressing around his line is a very big stress for him and scares him...so by trying to keep him safe and infection free we send him into a full blown tremor that can last for hours.
We are slowly making progress with his food infusion into his j tube. It's not going that great, he's miserable. But we have to keep going forward...we have to keep trying.

xoxo
K

7 comments:

emcorrow said...

Kate,
Your strength and perseverance has helped Kyle immensely through these years. As helpless as you may feel at times, know that you are helping him every minute of the day. I wish I could relieve some of this stress you are all enduring as you agonizingly wait to get to Colombus (which just irks me to no end that you have to wait that long anyway!!)
Know that we are all praying to whatever higher powers we may believe in (not always clear cut to me either) to offer Kyle some relief of his pain and anxiety.
Love the pics of your absolute sweeties...they truly are saints.
Hang in there!
Elaine

Sarah said...

So sorry that Kyle is struggling. I kinda know what you are feeling.. though to a lesser degree... having to wait and watch them suffer until someone can give you an answer.. that totally sucks.

Thinkin of you.. always! :)

-Sarah

Lauren said...

Kate-

My heart is so heavy for you and your family. I'm sending all my love and strength your way. Kyle is never far from my thoughts.

Lauren

Amy said...

Thinking of Kyle always...

Robin said...

Thinking of you and Kyle and your entire family! XOXO

Katie said...

Kate-I am keeping you and Kyle in my thoughts constantly. That is one amazing little man you have. Love you lots.

Katie Holley

Debbie said...

So, so, sorry you guys are struggling.

Stay strong and my prayers are with you.