Wednesday, June 9, 2010

the facts

~ Kyle is refluxing or vomiting every hour on the hour...sometimes as often as every 20 minutes.
~ His motility is in reverse right now (meaning instead of heading downstream it's heading up)
~We can get nothing into his g tube right now without him vomiting it up
~We are waiting for some direction from Columbus hoping to have that today
~We are beyond sad and have no idea what this means for our sweet boy
~Kyle is super at risk for aspiration into his lungs right now....major concern for us
~He is exhausted and very grumpy, won't acknowledge most people. We are very worried about his mental well being
~ This is all alot for us to handle, he's 5....he knows to much but not enough, that is a very hard combination
~We are all settled into the Children's Hospital and out of ICU! :) His room was completely decorated in Thomas stuff when we got here.....I have to say that the staff here is beyond amazing and take the most incredible care of all of us. If we have to be in the hospital I wouldn't want to be anywhere else.

I go from being incredibly sad to incredibly angry to incredibly grateful. My mind and body are so tired but I swear I'm so damn happy that we have made it thru the last 2 weeks I honestly questioned a few times if we would. But I tell you our Kyle's spirit and will are inspiring. He is beyond tough....


XO
Kate

23 comments:

Anonymous said...

Kate,
I think of you guys many times a day. I wish poor Kyle (and you) could catch a break. You will all be in my thoughts.

HUGS,
Jackie

Weerock said...

He is definitely the strongest little boy I have ever met. He gives me chills. Love him - and all of you - so much.

XOXO
D

Anonymous said...

Kate,

I heard about your little "big" guy from Diana Mains Allen and I've been praying and sending healing thoughts to Kyle and your family since. You are an amazing mom and you have a very brave, special little boy. I will continue to pray & send positive thoughts your way.

~Michelle Lewis

Anonymous said...

Kate,
I heard about you guys through Denise Dumont-Bernier. I can't imagine all that you are going through and feeling. I wish we knew Kyle because he seems like an amazing kid. He gets that from his parents I can tell..... I think of you guys daily and hope and pray that great things will come his way soon! He deserves to feel good and healthy and you deserve to see him get it! I will keep praying for your family.
Be well,
Stephanie Wagner

Megan said...

Hi Kate,

We are all praying for Kyle. What an amazing boy he is.
Stay strong.

Love and positive thoughts,
The St. Clair's
Megan , Daniel (Logan and Matilda)

Greg Nemchick said...

My thoughts and prayers are with you and your family.
Greg Nemchick

Anonymous said...

Kate,
Denise Dumont-Bernier and Teresa Canty have introduced me to your blog. Kyle's story touches my heart. Your strength amazes me. I am praying for Kyle and your family.
Best,
Nancy Erb

Heather said...

Sending love and prayers and knowing that Kyle and that incredible,courageous spirit of his,will see you through these days.

MJ said...

I keep you and Kyle in my thoughts and prayers.

Alison said...

Please know I am praying for you still..........What a shock and I am sure the grief is huge.....We have had 'smaller' issues like that that have gone completely sideways on us so I know the anguish they bring, I can't imagine how you feel.........hugs to you all.....So glad the staff is good. Sometimes that makes a big difference in keeping our spirits up.

RMmom said...

Hoping the doctors from Columbus call in with a game plan today to help Kyle eat. Vomit is my least favorite thing and I can't even imagine how he must feel after days of this....I would be down in the dumps too. I think of you guys all day and know that soon we will be looking back at this awful few weeks when Kyle is home...happy and healthy...and we will be doing a happy dance!!

Jessica said...

Kate your family is the strongest family I've ever known. Your little boys spirit comes from you. You are one awesome momma. I cannot even imagine how hard it has been for you guys. My heart breaks that he has to go thru all of this. Wishing for miracles and answers to all your prayers.

xoxo
Jessica

Anonymous said...

Oh Kate!!
What a rollercoaster to have been on for the last 5 years...so many very strong emotions going on!

I am so sorry you are going through all of this, Kyle and your family are always in my thoughts:)

Leigh

Lauren said...

xoxoxo,
Lauren

Brayden'smom said...

I am hoping and praying that the doctors can get Kyle's medical needs straightened out. I continue to pray for Kyle heath. I continue to pray that Jesus continues to hold your family during this difficult time.

momtoapreemie said...

I wish I could give you a big hug. I am so sorry. I am glad you have made it out of ICU. It has to be nice to be at Children's. I will continue to pray for Kyle.

Erin

mytwolittlewonders said...

xoxoxo!

Amy said...

All of my love to Kyle--I wish I could give him more than that...and may you continue to find strength. Thank you for keeping us posted--I know we are all thinking of Kyle constantly.
xoxoxo

"One Mommy" said...

This is beyond tuff,we have been praying that things will improve and soon!
I so wish there was something to help Kyle's mental health, no child should have to go through this! I am so greatful to hear that the staffing is trying there best to lift Kyle's spirits.
May God bless Kyle and his Mommy Daddy.

Hugs and Prayers Kyle is amazing :)

Carmen said...

Dear Kyle and everyone in your family,
A dear friend of mine once said, "When there are no words, let hearts touch hearts." From here in Chicago, know that you are all held in my heart.
All prayers and thoughts for better days ahead.
Love,
Carmen (Lauren's mom)

Patty, Alex, Adrian Lexis Mommy said...

Kate:

Know that the best wishes & prayers are sent your way. You, Kyle & all of your family have been thru so much. I wish there were something I could say to make you feel better or to take Kyle's pain aways If I could I WOULD.

Kyle YOU & your beautiful family are strong & although we are far far away I walk with you thru this time. Kyle is not only strong but amazing & the most awesome kid ever.

Things have to turn around & LOOK better. Please give kises to KYLE & as always you are in my heart & in our prayers specially Adrian's. YOU ARE THE BEST MOM, keep strong & when you are feling your saddes & most down think of that caring, loving handsome boy named KYLE who loves you so much & admires you as well as your family & myself. xoxoxo Kate

Patty

Stacy said...

Kate,
Those sure are some tough facts to face. I hope that Columbus has a direction for you to move in to help Kyles GI system working in the right direction and gives him relief from the refluxing. Many many hugs to you and Big.
Stacy

Katie said...

Kate,

I heard about Kyle and your family from Amy's blog. My positive thoughts and prayers are with you and your family right now!

Katie