One Big Adventure
An opportunity to log in some of the thoughts and activities of our homeschooling family of eight. We love books and good food and aspire to a Christ-centered, multi-generational, agrarian life.

Wednesday, April 21, 2010

What I know about James

There is LOTS to know about my little Jameser. And I admit, I have a lot to learn.

Monday, we went to Atlanta for James' monthly follow up with his oncologist. (As much as I love the folks in the clinic, I am looking forward to moving to every other month follow ups come October!). James looks great and so do his blood counts. We are grateful all is calm on that front!

That same day, we also met with Dr. Tenjarla, who follows James as a GI specialist. She agreed James looks great and his progress since we met three years ago has been nothing short of impressive. But... she doesn't want us to take the g-tube out yet.

She explained that it is really the surgeon who wants the g-tube to remain in place, but she made it plain that she supports their call and gave me more information to help me better prepare for James' surgery.

Evidently, many children who have this surgery (called reanastomosis) often end up in ICU for a few days. They may end up needing TPN and often need some sort of formula as nutrition and for getting things moving again in the GI following surgery.

I wondered how this would work practically, but, evidently, I hadn't yet asked all the right questions. Or hadn't asked the right people.

Having a g-tube for James will certainly make this whole process easier. We could use an NG tube, but that would, more than likely, make it harder for James to start eating by mouth on his own again. The typical children have a hard time increasing their food by mouth when they have another tube in the back of their throat. How much more would this bother James with his oral sensitivities? Probably a lot... and it would potentially be a big set back for him. We have seen this happen over and over again on the cancer floor, and I really don't want to put James through that.

That said, I'm not at all excited about TPN or formula either. But having this information, and a g-tube, will open the door for us to create our own natural food formulas at home to bring to the hospital to use for James. This will be a good thing, and as long as we can work out the details, I think keeping the g-tube for James will be beneficial all the way around.

I don't know how many of you have read a formula can recently, but all the carbohydrates in the formula James used for a time when he was on chemotherapy come from sugar and dextrose. ALL the carbohydrates! And the proteins come from overprocessed milk or soy. One thing we noticed is that as long as James was getting any formula at all, he had no interest in eating real food, but plenty of interest in 'junk'. Once we had James at home and switched him to homemade real food formula, he got interested in real food pretty quickly and it wasn't long until we didn't need to use the g-tube any more (we haven't fed him with the g-tube since last summer and we haven't used it for anything at all, including fluids, since November).

So, this is where things are now. I have a call into the surgeon to determine exactly what and how much has to happen before we can schedule James' surgery. And I will be calling a nutritionist we have worked with in the past for some help with numbers we need to consider when developing a 'formula' for James.

I am so glad and grateful to know this information now, so we can plan. I would feel so helpless to not get this when we were already in the hospital and I have nothing to work with. Thanks for your prayers. Please keep praying that the Lord would make our way plain!

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