Monday, November 23, 2009

liver enzymes

Kyle's dr here called and after chatting with her for a few minutes and talking about his tube and belly pain I heard her clear sigh a little and I nervously laughed and said...Oh your not calling for a check in are you? No....his liver enzymes are WAY up....up to high for him. She made an immediate change to his TPN and said we need to address this in Boston tomorrow. It's so clear that Kyle's body hates the TPN...we all hate it. But he needs it now..we can't even begin to put anything into his poor belly...the kid has been miserable for 2 Boston is now even more important. I know we are in safe hands...but I hate this. I hate all of it...I want someone to magically fix this...not exactly the most mature approach...but for this minute I don't want to be.

I will update when we get all settled in tomorrow...

Thank you...for support, love and most of all understanding.


Heather said...


My heart is going out to you as you begin this latest endeavor. I wish I could wave the magic wand for you and fix everything. Noah and I love you, Mark and the kids deeply and are thinking of you constantly.

We love you every day.

Heather and Noah

Kelly said...


I can't begin to tell you how many times I've thought, just magically get better, all the time I think that.

Lots of prayers for you all. Your on my mind constantly.



oleyfriends said...


I found your blog and wondered if you had heard of the Oley Foundation.

We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at

In particular you might be interested in the numerous articles about TPN (also called HPN – for “home” parenteral nutrition); medical information, tips for daily living, and coping strategies.

Newsletter article index:

You might also be interested in meeting other parents who have been there, done that. You can try these links below -- or feel free to contact me and I can make a more personal match.

• Meet Patients Section (try all three links)

Finally – a great resource for home TPN.

• TPN Complication Chart

I'm so glad you are going to Boston Children's where you will be in good hands. They are running the research on a new treatment for liver disease in children on TPN -- Omegaven -- and have had good results.

If you have any questions or would like to be introduced to another family, feel free to contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY

Anonymous said...


Maturity is for people who haven't dealt with a sick kid for five years. Maturity is for people who don't wake up each morning and have to unhook their sweet, tiny son from wires and tubes.

So you go ahead and be immature. I'm going to be immature with you and wish for a magical cure for Kyle too.

Maturity is for the birds.

Wishing all the best for you all,


Lauren said...

Maturity can suck it... I'm down for a little magic for you guys! You deserve all the magic in Disney and more.

You are in my thoughts today and I am wishing on every star in the sky that today goes better than anyone could have ever imagined.

Come on magic.