Friday, February 19, 2010

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.


  1. Who hoo Dana. Go Joshua. We are praying every night that Joshua stays hydrated and well. And that you have continued perserverence to see this through. Yall are absolutely AMAZING. You constantly teach me so much by just being who you are. Funny how God places angels on earth in regular people to show us just what faith and courage are. Cathy

  2. Hi,

    This is Roz from the Oley Foundation.

    I'm so glad to hear the good news about the reduction in TPN! Yippee!!

    Has the MD talked to you at all about Oral Rehydration Solutions (ORS) to help avoid dehydration? Joshua could sip them throughout the day or put them through a g or j tube if he has one. You many have seen information on ORS at the Oley conference.

    At any rate -- here's a link to an article that has several recipes for ORS:

    Here's where you can buy an ORS mix that's already made:

    Here's where you can read more about ORS: and

    Good luck! Call or email if you have questions. (800 776 OLEY or