One Whole Week and All's Well

So far so good.

Joshua's first week on reduced TPN has gone as smoothly as can be expected. He managed okay last weekend, but by Monday night, he was looking a little weak. Ready for TPN for sure. Today finds him much livelier and I'm anxious to see how the day goes tomorrow. We have an appointment with his GI, he's gonna be so proud of our little guy! I know we are!

Joshua's feeds are at 68 ml/hr and tomorrow I'll raise him to 69! Wow! That number would have been out of the question a year ago.

This all reminds me of an e-mail I once received. I don't remember all the details, but it was something about how unimportant most of us think a tenth of a second is. But how huge it could be to an Olympic runner. It went on to talk about other assorted seemingly small measures, that are extremely important to some.

So that is what I feel about ONE MILLILITER. I think it's HUGE!

We've lived our lives one ml at a time since Joshua was born and to see them passing by so quickly is mind-blowing. I'm a little dazed by the whole thing. A couple of years ago, for at least 12 months, Joshua's digestive system just couldn't handle more than 18 ml/hr. We'd make it to 19 okay, push him to 20, then loose ground and find ourselves back at 18 or even 16. Over and over and over. Joshua's little body was always very good about letting us know when he wasn't ready.

So, in a way I feel like this is a trap and well be sliding back down again in a moment's notice. That sounds negative I know. Not so much negative as routine. It was our routine for so long. Something I heard at a the Oley Foundation Convention last year has stuck with me. Never get too complacent with your care, but be careful taking risks.

That's the key. Is there such a thing as careful risk-taking? If so, I'm pretty sure that's what we do around here!

Monday, Wednesday, Friday

Our first step toward weaning of TPN starts NOW! Joshua's now tolerating 67 mls/hr of his formula over 16 hours through his g-button. His GI has written orders to hang TPN only 3 nights a week. We've tried something similar in the past, but Joshua wasn't ready and suffered from severe dehydration. He's tolerating his enteral feeds much better at this time, so hopefully we won't see the same negative responses.

So, what does this really mean?

Well, for once, Joshua can sleep through the night without being tethered to a pump/pole. His late night emergency trips to the bathroom will be much less complicated. I am freed up of the nightly ritual of aseptically mixing and hanging the TPN. It's less access to his line with less chance of introducing an unwanted bacteria into Joshua's system. And most importantly, it's Joshua's opportunity to show us what he's got. If this goes well, we are one step closer to being central line free!

After three years of our lives revolving around that little rubber tube, the idea that it would no longer have a presence in our lives is mind-blowing!


The D-word does loom over us. DEHYDRATION. But, God is amazing and we have living breathing proof that prayers can be answered.

Thank you to all who continue to pray for our little Joshua. It's working.