First Trip to Bethesda

I have an appointment scheduled for Olivia to see the nutritionist, Cheryl Issa, and Dr. Min's nurse to insert the Naso-gastro tube (NG tube or NGT). The appointment is on Thursday, August 18 at 10 a.m. at Bethesda.

"Luz", the nurse, called to arrange the appointment and to explain much of what will happen that day. Olivia is not to have anything to eat or drink after we leave our house, to reduce chance of getting sick at the appointment. We are to bring with us the pump that has been ordered, and hopefully will be delivered before next Wednesday. If it doesn't come before our visit, she will still have it inserted, but we won't be able to use it until the pump comes.

We will meet with Cheryl and get the nutrition plan. She will tell us what is the best to start. We expect they will want to do continuous feeds at night and allow her to eat by mouth during the day, but it may all depend on how she does with the tube in while she's drinking orally.

We are of course concerned that the pump won't come on time. I don't want to have to learn part and then have to wait and then learn more on a different day. What if the information doesn't mesh?

We should be able to find out pretty quickly how she will tolerate the NGT and how well she handles the feeding. I expect that our learning curve will be pretty steep. Olivia is generally pretty sensitive about having things around her face - well, this is a tube into her nose that's taped to her face! We can only pray that she'll be able to take it in stride and continue laughing and smiling and eating normally. I hope that she doesn't lose any of her swallowing ability. It took her a very long time to learn to swallow thin liquids w/o them going into her sinuses. I'd rather not take any steps backward.

That's about it... Please keep Liv in your prayers!!!