Tuesday, April 20, 2010

Trying to move forward, yet feeling stuck

I should start this by saying we had a great weekend....we all got some sleep, we loved on the new puppy, we hung out as a family...it was great. The only issues have been the on going issues with Kyle's lungs. Any exercise or activity is leaving him winded and in need of extra oxygen and a treatment. We saw pulmonary today and he was not very happy with Kyle's lungs and energy level. It's another week of IV steroids and an additional 3 days of antibiotics...all of which play havoc on Kyle's body. Basically it's another week of 22 hours on the IV. It's hard to explain that to Kyle, I feel like all I do is try to reason with him....I try to keep it fun and I'll admit I bribe him, anything to stop the tears from falling. We now start the countdown of a month until surgery, he has to stay healthy or we have to start over, his pulmonary dr is concerned that since he is refluxing this may be the best we can get his lungs...which is a big concern...his surgery is a big one, he needs to be perfect. Him not being perfect is a very scary feeling.

We head to the hospital in the am for an upper GI, the one test that Kyle hates...it's going to be a long morning and I know we will both be happy when it's over. Hoping we don't see more reflux then before and hoping that we don't see any major red flags that would force us to move up surgery.

On top of that Kyle's labs weren't great this week...his White Blood cell count is very high...hoping that is not an indication of an infection coming...I've been driving him nuts today asking him how he's feeling, pretty sure he's ready for a break from his Mom. :)

Tonight I'm sitting here in front of the computer and usually the words come so easily to me...tonight not so much. I'm anxious...nervous, I hate to think that I'll feel this way for the next month....yet then I realize a part of me has felt this way for 5 years. The ups and downs...both are extremes, the highs feel so amazing but the lows feel so incredibly low.




Amy said...

Thinking of you...

Stacy said...

So glad you had a great weekend, you guys needed one of those! Oh, I wish they could just figure out a miracle cure for Kyle instead of him having to go through all of this. I know it is frustrating for both him and your family. I'll be keeping Kyle in my thoughts for his procedure tomorrow and home that you get news that doesn't move up surgery for him, giving him time to hopefully get a little better. Big hugs! I'm with you, these rollercoasters that we're on suck!

Heather said...

No need to write Kate,just be.

Praying for your sweet guy and of course his sweet momma.

*I just love this picture of him ... so,so precious.

Lauren said...

Adorable picture! That kiddo can bring a smile to anyone's face!

Thinking of you guys always and sending all our love your way.