Tuesday, June 15, 2010


Nothing is harder as a parent than to force your screaming child to do something you know is medically necessary. Yesterday a rectal monometry was preformed on Joshua. Yes, it was just as tramatic as it sounds. As a four year old, Joshua has had to endure so much more than many adults. He's always been so strong and wise, sometimes to a fault. He's got such a unexpected understanding of all that goes on - to him, for him, and in him.

We won't know how the test went until at least next week, but right off the bat it looks promising. Even I could see the movements that we were looking for in his colon. Just need the formal report stating that we can rule out Hirshprung's.

Sometimes the best treatment is to rule out possible conditions, especially the worst possible scenarios. In the event that our fears come true, it is so amazing how God can give you the grace to process it, accept it and prepare for the next move. But, until then I like to push them way far away from my thoughts. I think that is just as healthy too.

For now we remain in hospital, waiting. Waiting for the assurance that he's tolerating the new formula he's been put on. Waiting to see if surgery is in our future. Waiting...waiting takes a lot of grace. Lord give me grace.

Saturday, June 12, 2010

My Head is Spinning

Most of you know that we've spent the last four days in Pittsburgh for a small bowel transplant re-evaluation at Children's Hospital in Pitt. This is the second time we've been up there and it is quite an experience. They've got such a wonderful hospital and team, it's just an extremely intense stay. In less than four days we had a sonogram, upper GI - small bowel follow through, saw 5 physicians, 1 social worker, 1 educator and 1 dietitian and 1 wound care specialist.

SO, needless to say, my head is spinning!

There's so much to take in and process. They're making a few changes and suggesting some things that hopefully will make a difference. This week we should have another monometry test done, this time on his lower bowel. There's a possibility that a biopsy needs to be taken from the colon as well. The surgeon up there also mentioned that a STEP procedure could be beneficial as well.

Changes that are being set in motion already are: a new formula, discontinuing of probiotics, using ethanol to "lock" his central line a few times throughout the week to hopefully cut down infection and I got a great list of do's and dont's on his diet.

All in all a very successful trip.

So many people have made this entire experience possible. In efforts of not missing anyone, Justin and I want to just publicly thank our amazing family, friends and hospital staff here at Cook Children's. You've all gone above and beyond to help out Joshua and the rest of our family, whether it be monetarily, emotionally, taking care of arrangements or by keeping Caleb and Stephen in this tormoltuous time.

Thank you, thank you, thank you!

And a big thanks to 5 South for always making us feel special and at home!

Tuesday, June 1, 2010

A Whole Lot of Shakin' Goin' On

Today, the first day of June, finds us still in hospital. We are attempting to get Joshua back up to full strength feeds (right now he's taking half pedialyte, half elemental formula.) He was doing great over the past few days on just Pedialyte, but today the tides seem to be turning. His GI is focused on the amount of fluid that seems to be hanging around in Joshua's gut. It's pretty funny to see that great, extremely intelligent doctor do his slosh test. With his hands around Joshua's mid section he shakes him gently back and forth to listen for an overabundance of residual fluid.
He called this afternoon to see how Joshua was doing on the more concentrated formula and literally asked me to shake his belly and let him know if I could hear anything! Unfortunately, Joshua didn't pass the "slosh test!" But, the good doctor has had some ideas and I'm anxious to see them in action.

Once again, trial and error, trial and error!

We're thinking now that for some reason his digestive tract when fed with nutrition is actually pulling water away from the intestinal walls. It's depleting Joshua's body of even more fluid than normal, leaving him more dehydrated while taking in feeds than when not. We'll know more after some further testing.

But in the meantime, I expect there to be a whole lot of shakin' goin' on!