Wednesday, December 23, 2009

Where to start

I don't even know where to start, it seems strange to feel so happy to be home yet feel so sad inside over where we are in this struggle with Kyle's health. I am trying to keep clinging to the fact that we are home, and yet knowing we'll have to go back sometime soon. Here is the latest...

We no longer have any use of Kyle's belly, his motility has as far as we can tell totally shut down, all his meds have to go thru IV...they have had to increase his TPN to 14 hours a day, along with the IV antibiotics his now hooked up a total of 16 hours a day..not an easy thing to explain to a 5 year old. Even with these changes his retching and gagging has drastically increased this week..it is at times painful to watch. His lungs are not liking the gagging and we have had to increase oxygen and treatments. His pain comes and goes, it is far better than it was over the weekend but its a constant worry for us.

The plan right now is to try to get thru Christmas and get him into Tufts in Boston. He will need further testing to try to figure this all out. At this point we are willing to go wherever we need to go to find some relief for him. It was a hard weekend...even harder than after surgery.

I just don't understand...
xoxo
K

8 comments:

The Phamily Matriarch said...

Billy and I jumped for joy knowing that Kyle would be home for Christmas, but we both know the task ahead of you each day to keep him comfortable is not an easy one for y'all.

I so wish and pray for some relief for him. I just don't understand either.

We love y'all to Pluto and back!
B & J

Heather said...

Katie,

I am so glad that Biggy is home with him family for the holidays. Please let me know if there is anything that Noah and I can do. Sending you many, many hugs and kisses.

Love you every day!
HAW

Shraddha@theselfloveproject said...

Kate i am happy that family is together for this special holiday.

my heart stops everytime i read how much Kyle is suffering.As a mother my heart pains for your child and you.

With best wishes from my side
S

Lauren said...

Kate-

I'm thankful you will be able to spend the holidays together as a family. That being said, my heart just aches to pieces for you guys.

I'm right there with you. I don't understand any of this. I don't think I ever will.

However, I do understand completely that your family is filled with love on the inside and out.

Sending you guys all our strength and love,
Lauren

Missy said...

Kate,

I'm glad that Christmas will be at home.

I completely understand... know you aren't alone.

Missy

Sharlene said...

Kate,

I wish I had that 'magic wand' to make it all better so he could really enjoy this Christmas! This poor lil' guy has been through so much!!
Sending you hugs, hope, healing, and lotsa love!!

Enjoy the time together as a family this Christmas!!

I wish I could understand too, it's just not fair and is so hard on a mother's heart!!

HUGS!
Sharlene

Amy said...

Kate-
I'm raising my glass to you all having a good day together tomorrow.

Cheers...
Amy

Anonymous said...

Kate,
I hope your family had a good Christmas all being home together.
I am so sorry...I don't understand about motility or TPN...I wish I could offer any bit of insight or comfort to you.
I am sorry that you are not closer to an answer for Kyle, sorry that he has been dealing with so much pain and now has to be hooked up to IVs for longer periods of time.
Let me know if you ever need anything.
Leigh