Wednesday, October 20, 2010

dragging my feet

I am..I can't even believe I'm about to have to type this let alone it be a reality. Yesterday we came in early for Kyle's upper UGI and swallow study. Honestly I knew it was going to be a disaster..I mean really a swallow study on a kid who doesn't drink by mouth?! We got registered, got checked in and made our way to flouro....started the test, and then sat there and watched as they injected dye into his g tube and waited....and waited...and waited as it sat there and didn't move. We waited and watched as the barium made it's way up....not down the way it's supposed to go. We watched it snake it's way up into the loops of bowel that are now in Kyle's esophagus....I could literally feel myself start to sweat. The the dr says ok I need him to drink....yah ok so they give me a syringe and into his mouth I go, at this point feeling like the worst mother on the planet...he starts to scream and choke but does swallow....and we wait and watch again as the barium pools at the bottom of his esophagus and goes no where. At this point the Dr says..get up and walk for 30 minutes and we can take another series of pictures...we then repeat this step 3 more times....and we watch as the barium continues to go no where.

After all this Kyle is exhausted and just wants to get to his room to rest, we go through admitting and get to our room. About 20 minutes into this process Kyle starts to complain that he's cold, which is always a signal that a fever is coming, I start to think that's impossible, I mean really....there is no way this could be happening, but it is and within another 20 minutes he hits 102.6. Blood cultures are drawn, a full viral workup is done and we get a chest x ray. The surgeon comes in and explains his plan for the next day and says....well clearly surgery depends on if we can break the fever and he stays fever free until surgery time. Fast forward to 4 am today and back up to 102 we go.....5 am...98.6. Confusion is setting in and we can't figure out where the fever is coming from and if they will pull the plug for sure or not. At 1 today the surgeon comes in and says it's to risky to perform this major of a surgery with a potential of anything already going wrong in his body. Which we totally agree with, but it stings...big time. They can't get him back on the schedule until Tuesday...so here we sit. We haven't even had time to figure out the logistics of how we are going to do this, I can't even think about how long this will keep me from Alex and Jack.....we haven't even really told him what's going on yet....

XO
K

9 comments:

Anonymous said...

We have never meet, but I knew you can do it. You are a very women and more amazing an amazing, strong and wonderful mother. Just remember one foot in front of the other and one thing at a time. Look into the beautiful little face and remember why you are doing this and then hold your little boy.

Lauren said...

Oh Kate- I'm so sorry to hear this news! I woke up with you guys in my thoughts and you haven't left since.

All my love your way-
Lauren

Brittany said...

Hello! I know I do not know you and I only decided to follow your blog yesterday or maybe the day before and after reading a few of your posts I came to the conclusion that as I have no idea what your going through nor what I would do if I had to go through it the only thing I can say is that I will say a prayer for little Kyle, you and your whole family. You seem like a very strong women and I know Kyle is strong as any child in his postion would be so I'm sure everything will go just fine but as I said before a special prayer is being sent up just for you guys! :)

Shari said...

I am so sorry Kate! Keep your chin up! We are pulling for you!

Lori Ann said...

I'm so sorry. Words are enough, I know. Praying for Kyle and his doctors and all of you.

Christine said...

I am so sorry for yet another complication. All of my love and prayers are going toward you and your sweet loving family. I know it must be so hard to be so far away from home, but you and Kyle will definitely get through this. And, please do take one day at a time. I am glad they are being cautious. They have to. Everyone loves Kyle way too much to risk anything with him. Please hug him extra close for all of us back home.

Heidi said...

(((HUGS))) OH NO, I cant believe it, Im so sorry. I pray the source of the fever is found quickly so Tuesday is a go. Thinking about you all tonight, prayers always-
Heidi & Jack.

Sharlene said...

(((((((((((HUGS))))))))) and prayers - my heart aches knowing you're all in this position right now!! XOXO

Anonymous said...

We continue to pray for strength for all of you and clear tests for Kyle.

We love you!
Tracy & Ansley