Benson and Claire were born with a rare genetic disease in which their liver produces too much oxalate--called primary hyperoxaluria. Claire's condition has progressed much faster than Benson's. She was on dialysis since she was 3 months old and for much of that time, did dialysis 3 hours a day, 6 days a week. She receive a much needed kidney / liver transplant on December 18, 2009. It is expected Benson will eventually need similar transplants.


Wednesday, July 21, 2010

thoughts on the tube

The G-tube is a marvelous invention. Claire gets fed through it every 2 hours...and has used it to "eat" since she was 3 months old. It's also what we give her all her medications through. I really can't imagine giving a baby/toddler all the medicine she's had to take throughout her short but meaningful life-time through her mouth. What a blessing to just shoot it through the tube and not have her taste (or spit out) a thing. Of course that will eventually change, but for now, it's fabulous.

However here's one instance in which the g-tube is a PAIN in my BRAIN!!!


See that tube on the right. That's supposed to be hooked into her g-tube. And the big puddle of milk just below the tube is supposed to be in her tummy....not all over the crib and the sleeping child!! And the green towel is our 'back-up' plan for occasions like this. We put the towel down where she usually lays and if something like this happens, hopefully the towel gets the brunt of the milk on it and we don't have to change out her entire crib sheets. Unfortunately, our brilliant towel idea rarely works. But we still keep doing it just to make ourselves feel better.

Oh, the loads of laundry that have been done on her crib sheets, pajamas, and favorite blanket.

Seriously, so not fun for a sleeping child (or parent) to wake up to!

Still love the g-tube...just NOT for this reason.

5 comments:

Terry said...

hey natalie to bad that the g tube comes out sometimes. cant wait for boston. only 2 more days love ya aleena

~adelle said...

You should see what the floor in my kitchen looks like. :) I guess it's a trade off...cleaning sheets or mopping the floor!

Hope you are having a great trip!

John & Shauna said...

I just checked your blog. We have been out of town. I can't believe you are already half way through your pregnancy. I'm glad you are feeling better.

Ryan & Keri said...

No fun. But on a happier note, the posts below sound like you guys are getting to have a semi-normal summer with less medical issues than you ever have. What a blessing! We still pray for your sweet babies and family. We love you!

E Jones said...

I am sure you already know how to do this but I just learned. You can make the crib many times and helps when you have to change the sheets. Put on the mattress pad and then your cribsheet and then another mattress pad and another crib sheet. You can do as many layers as you want. Hope this helps. Praying for you and your family!