Tuesday, February 16, 2010

Where we stand

I hate when I have days where my thoughts are so jumbled that I can't seem to form words. I looked around the house today and was dismayed to realize I had gotten nothing done except take Kyle for a weight check, start his j tube feeds, check his sugars 3 times and start his TPN, which at that point him and I really are pretty much attached at the hip since now he has three things hanging off of him and can't move without help. Maybe it's the lack of sleep...Kyle's sugars are to high now and since last Wednesday I have been having to test them every 2 hours while on TPN...not only does it makes for a long sleepless night. Err I mean nights...bare with me...but that sweet boy is literally a pin cushion...makes me ill when he cringes every single time I do it...(of course he never complains..)the 18 hour TPN is not fun and it's trying for both him and I....we are increasing feeds which is great! But (of course you knew there would be a but) with the increase comes more output and more pain....and of course more leakage around the tube. But at the same time, as hard as it is on him...gosh he smiles, and he loves and he is so smart....and when he laughs....you laugh, because it's addicting when he laughs.

I had so much more to say....I've had one of those days....but it will have to wait...time to check his sugars again. ;)



stacyat said...

Oh Kate, my heart goes out to you! I cannot imagine seing your little boy suffer day after day. I hope that you are able to find out answers and better treatments soon to get him to being a healthy little boy. I can see what you mean about his laugh, if it is anything like his adorable little smile. Thinking of you and Kyle and the rest of the family!

Lauren said...


Just a picture of your Kyle lights up a room over 5,000 miles away! I can only imagine what being in the same room with that laugh does for ones' heart.

My thoughts are always always with you and Kyle,


Shari said...

I know you see your boy suffer so. I can't imagine seeing a child suffer physically. I have just the opposite. My youngest son suffers mentally. It's all sad and no child should suffer. I pray daily for your precious guy. He is so cute!

Shari said...
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Heidi said...

(((Kate))) Sending you hugs. That boy always amazes me, he is so brave and youre SO strong. Love and prayers for your family tonight-
Heidi & Jack.

Weerock said...

Love mesome Big. I've never met a little boy who is so infectious! When he turns around...and literally backs into your lap, it makes you want to just squeeze him and never let go. Love him.