Monday, January 19, 2009


We are slowly settling in much has changed with Noah's care, I'm still trying to get myself organized. Noah is doing well and has settled in easily this time. We have not ventured out with him yet, but Kailyn has been asking for a while to have me bring Noah in for show and tell. She talks about him lots, but the kids have many questions, so she wants to show them his tubes and pumps. So tomorrow morning I will bring him in to the school. Should be interesting!Some good news is that we have finally been able to start ethanol locks in Noah's central line! This is something that we first heard about at the Oley conference last June, but we couldn't convince the powers that be to try it until now. Noah triglycerides were starting to climb, so it looked like he needed a few hours off the TPN to give his liver a rest. And since we'd have a few hours off, we finally got the go ahead to try the ethanol. So each afternoon, we stop Noah's TPN, inject ethanol into his central line, leave it in for 4 hours, then pull the ethanol out and restart his TPN. The ethanol is supposed to sterilize the inside of his line and decrease line infections. There are some good studies out there with great results, so we are hopeful that this will make a difference. The only risk is that we may have issues with clots forming. Seems that there is never an easy answer, but we have to give it a try to hopefully extend the life of this line. And the bonus is that Noah gets 4 hours a day where he is free of pumps and able to just be a normal kid!!


Anonymous said...

Noah is looking very cute. That's neat he gets to go for show and tell. I'm glad you are able to try out the ethanol flushes. Sounds interesting. Praying you will continue to adjust to being at home again.

Anonymous said...

Wow! Talk about an answer to prayer. Prayingthe ethanol locks would keep his line safe. Great to hear your taking Noah to school. A great opportunity for the kids teachers and classmates to get to meet him face to face, I am sure they will all fall in love with him. love you guys. Love mom

Anonymous said...

What a great picture of Noah, and I am so glad your all home now. We have been doing the ethanol locks with Jake for a couple of months now, and Boston Children's Hospital swears by it, I am glad you were able to convince them to do it. They told us not to worry about clots cause their is a small amount of Heperin in it.

I hope the next month goes by smooth so you can all get ready for your MAW Disney trip. You really have to keep me updatded either on the DIS boards or the TPN board on how it all works with the TPN/IV fluids and meds go

Christine and Jakers