Monday, February 1, 2010

Things are not going so well

We are schduled to be admitted to the hospital on Wednesday morning. Unless his labs from today come back and he urgently needs to be admitted we'll continue to plan for Wednesday. Mark and I are very concerned with Kyle, his twitching and shaking are getting worse, any stress at yesterday I had to change the dressing around his PICC line, clean it and then reapply the dressing, it's painful for him, he has small cuts in the skin where the bandages have casused break down which sting and bleed during every change. This process scares him to no end. After the change the twitching and trembling increased to almost non stop. Mark and I couldn't sleep last night, petrified of what is going on with our sweet boy. After talking to the dr on the phone they really believe the stress of everything is catching up to him. He's 5 now, he gets some things and sadly doesn't get others so it's so confusing and scary to him. I have been heartbroken the last two days....spent most of last night in and out of his room...scared. I just love and adore him so much it makes my body ache. I'm petrified of what happens when we hit the hospital on Wednesday what that will do to him.

We will be meeting with the GI, wellness, and Neuro team on Wednesday so we can try to help our beautiful boy.



Lauren said...

Oh Kate,

I have no words. My heart aches with you.

Please know I am thinking of you and your little Kyle wishing with all my wishes and hoping with all my hope that a measure of peace is found for you all.


Missy said...


I understand the fear and I'm sorry you are looking at another admission. I'm sure you've tried this, but we've recently moved to using Opsite instead of Tegaderm and it's really helped Samuel with dressing changes.

Have you checked his blood sugar during the shaking spells? Once again, I'm sure this is something you've thought of, but thought I'd throw it out there!

I'm thinking about you too and I'll text you in the morning!


Anonymous said...

My heart truly aches right along with yours. I cant even imagine. Please know that I am keeping Kyle in my thoughts. I hate this for him and for you.

Hugs and Love,

Sarah said...

Thinking of Kyle, always!

I thought about you yesterday when we were getting Quinn in school. she had been absent for almost a whole month and a lot of the staff was excited and then they would look at me and ask me how she was doing. i just remember you writing a blog about how you basically lie and tell them that things were good. And I caught myself doing that. I dunno what it is... if it's that we don't want people to feel sorry for them, or that we just want to believe that everything really is fine. or if we just want to avoid the added questions, or maybe all of the above. Anyway, I truly think of you guys every single day.

i hope today is going ok and that a plan is in place.

I kinda like this blogspot thing... maybe i should start one up. a lot of the old Share friends are here.