Wednesday, April 28, 2010

Coasting along

Day to day...hour by hour at times...coasting....waiting....I feel like we are truly living day to day...Kyle has been so up and down that I'm finding it hard to keep up. He is still on the IV steroids and we are concerned that this might be the best we can get his lungs until surgery. He's getting tired very easily and complaining of his "breathes" as he calls it. His color hasn't been great and he is back on O2 more....which he is ok with...(this is both good and bad) Still on the 20 hour tpn...which he also has been pretty good about. His blood sugars have been to high which is a concern and we are hoping they will get better after he's off the steroids.

It looks like surgery the second week of May, it's a compromise between his GI dr and pulmonary dr...GI wants the surgery now, while pulmonary is more cautious with his lungs. At this point I'm not sure how I feel, so many emotions about this brain is having a hard time processing it. I don't know how to prepare him for this, he's 5, he's smart and this will test his limits...I think it will test all our limits.

Jack and Alex are good, so patient.... Gosh I wonder what I would do without them...




Shawna said...

I think you are one of the strongest women I know! I am being serious, the things you and your family have been through break people, but you keep on moving, smiling, praying! I think of you guys often, and hope things get better soon!

And I love the picture of you and Kyle!

XO, Shawna

Karen Owens said...

Stopping by to check in -- Prayers are with you all!

Anonymous said...

Thanks so much for keeping us updated about Kyle. Good luck with getting ready for surgery the next few weeks, I really hope everything goes well!

Heidi said...

Kate, LOVE the picture, beautiful. I always admire your strength. I cant imagine what youre going through day to day with worry. So hard to hear Kyle is struggling. I pray his health stabilizes enough to have this surgery soon. Your family isnt ever far from my mind, you are their ROCK Kate. Hugs, hugs, hugs to that beautiful and brave little boy of yours, prayers always--
Heidi & Jack.