Friday, August 20, 2010

Hope

I had to wait two days to blog about Wednesday. If I didn't this post would have been filled with way to many emotions and I just couldn't go there. Now that we've had a buffer day I feel more level headed. Taking Kyle to the hospital for anything is hard on all of us....and by all of us I mean our entire family. Alex and Jack always have 100 questions and Alex always gets this look of fear on her face. For Mark and I anytime we have to watch our baby rolled into the OR and put to sleep it's beyond painful. We know that with Kyle nothing ever goes the way it's supposed to and we usually get some bad news during this process. I have to say Kyle was nervous this time, he asked us a few times if this was going to be like last time (his last major surgery) we reassured him that is wasn't that this would be quick but that he would wake up with a tube in his nose. The tube was super important and it would hopefully help us get his tpn hours down a little. I have to say he was totally cracking us up on the way to the OR, this kid knows the drill and was asking for the white sleepy medicine.

We expected 30-60 minutes of wait time, a quick scope and tube placement....after an hour we started to get nervous...once we hit 2 hours we knew there was a problem. His dr came out and the look on her face said it all.... The tube could not be placed it became dangerous to keep trying, his lugs were not happy and they had to re intubate him 3 times....steroids were given and breathing treatments started. His anatomy is to complicated and they couldn't get the tube far enough down. They also discovered a pocket located and attached next to his esophagus where spit and bile are pooling and this is why he's vomiting so much....

So where so we go from here, Monday we'll be admitted and Kyle will have a blood transfusion....he's not making the blood he needs and now is severely anemic. Next Friday we head back to the OR and a new team along with Kyle's GI dr will try again to get the tube inserted. They are promising nothing but we have to try again, Columbus needs this info to plan our trip there....if we can get feeds started this is major for us and for Kyle...if we can't....well we are not going there for now. We just aren't.

Kyle's had a fat lip and a bloody nose, vomiting alot and overall sad since Wednesday...We are trying so hard to keep him comfortable, happy, safe...I feel like we are failing him on all fronts. I can't go inside of him and fix his body.....it's horrible to be able to do nothing to bring comfort to your child.

This weekend we are just hanging as a family and trying to keep Kyle and the other kids surrounded with love. We still have hope. After a phone call with Kyle's dr late at night last week she said, are you giving up? You sound sad. I let her know I will NEVER give up on Kyle, never...but am I sad....yes. Very sad. But I still have HOPE, and I will have hope even after they tell me not to.
Kate

11 comments:

Leigh, Tucker's Mom said...

Wow, Kate, I don't even know what to say.

To know that even "simple" procedures never go as planned for Kyle just breaks my heart. I don't fully understand the technical part of what you are saying, but I understand the fear and sadness that is coming across the screen.

I am so sorry, Kate, I hope that the new team and/or the Columbus team has some relief in store,

Leigh

mytwolittlewonders said...

Thinking of you guys and sending oddles of hugs!

S

Reagan Leigh said...

My heart goes out to you. It's just so hard to have to watch your child go through all of this. I've had some of those sad days lately as well. Praying that this hospital stay will bring some much needed improvement for Kyle and a successful tube placement on Friday!

Brayden'smom said...

Praying for Kyle!!!

Jessica said...

Oh no, I'm sorry that the tube couldn't be placed. THere is such a terrible moment when the surgeon comes out of the OR with "that look"... and you just know something went very badly. :( I am praying for monday!

Eithene'd body won't make red cells either and she needs to be transfused every 3-5 weeks. It make a huge difference for her, and will hopefully give Kyle just the boost he needs!

I am definitely thinking about you and your family, and saying a prayer right now for your sweet boy.

Anonymous said...

Praying for Kyle, and your family daily. I started reading your blog several months ago. You are an amazing woman, and Kyle is lucky to have you fighting for him daily.

(((HUGS))) from TX

Sarah said...

I'm so sorry, Kate. Nothing is ever easy for Kyle. I feel so bad for what you guys have to go through, constantly. I'm thinking of you guys. thank you for the update.

Anonymous said...

Hey Kate,

I'm up late tonight, unable to sleep. I havent been on your blog lately and now I am officially caught up. You are just my shero. Your strength and Kyle's amazing courage has brought me through so many times. Long before I met you and even longer before I had the courage to start communicating with you. Hope...always, always hold onto it Kate. Never, ever let anyone steal that from you. I, myself, wish I can go into Kyle and fix him. Enough already!!! I pray and pray and pray for your little boy and I know they are being heard because he is still with you. I know part of his survival is his fight, but I wish he did not have to fight so hard. Enough already!!

Please know that even though it may appear that I am not around on the various sites that you and i are a part of, I am always around reading and just keeping up.

Hugs to you and your family!

Love and Friendship,
Yolonda

PMRowley said...

Kate,

I've been more away than here lately, but know that Kyle and you and the rest of your beautiful family are never far from my thoughts and never absent from my prayers.

Much love,
Page

Heidi said...

(((Kate))) Sorry to hear the tube placement wasnt possible. I havent been blogging much lately but trying to get caught up here, he's never far from my mind.

I nearly broke in tears when Kyle cried over your baked potato--so hard to see him sad about eating. Jack was NPO for several weeks and it was the hardest time for him and me (even though he only eats chips! but its everything to him) PRAYING Friday the tube placment will be a success. HUGS and lots of prayers for your sweet boy-
Heidi & Jack.

MJ said...

I am so sorry to hear about yet another setback for your sweet boy and for all of your family.

Your hope is inspiring, I admire you so much!

I will keep you in my prayers.