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.