Moving Forward

I talked with the nurse yesterday on the phone, from 5:00-6:00pm. Poor lady. She didn't know what she was getting herself into when she called me ;)

Maddox will be getting the feeding tube next week (as soon as Monday) or the following week. I found out that I will be putting the feeding tube in with coaching. I almost died when she told me that, but it makes perfect sense. I need to learn how to do this because I may have to do that at home if he pulls it out. holy crap.

She also said she is pushing to have us stay overnight a night or two at the hospital once the tube is in. Which I am ALL FOR! I told her to tell the Dr. I am FREAKING out. If he tolerates it well the 1st night, we will be able to go home. Otherwise it will be two nights. I feel much better knowing we will be staying at the hospital surrounded by medical professionals.

Some of the challenges of staying in the hosiptal revolve around .....wait for it...food. (surprise!)
There's a lot of cross contamination in the kitchen, so we will be bringing most of Maddox's food. And the cafeteria doesn't have a gluten free menu, however there is a whole foods place a few blocks away from the hospital, so I should be able to get food for myself, but I don't know that I will be all that hungry.

Because it is being done at the hospital, Maddox will get a kid version of a valium or ativan to help him with the procedure. I asked if they had valium for the moms, but the nurse said no. Maybe I could ask if they have medical marijuannna for the moms.

We tried an appetite stimulant (really just an antihistamine) for most of this week. It seemed to perk up his appetite a bit, but it made him very sleepy. He was taking 3 hour naps (which I admit was a little nice), but then just laying around the rest of the afternoon (so not like him), so I stopped the medicine. And this morning he barely ate anything and a rough start to the morning with screaming and crying. I think once he is getting all the nutrition and calories he needs, he will be less irritable and the screaming will go way down. So, I am feeling a bit better about the feeding tube.

The nurse will call me back today. I think I am feeling better just knowing we are moving forward and not waiting.

I am also PRAYING that God will guide my hand and prepare Maddox and that the whole procedure goes as well as it can. Talk about giving it over to God. I cannot NOT give this over to HIM. When I don't I almost can't breathe. I don't know why this is so hard for me, but I. Am. Freaked. Out. Inserting the feeding tube is not pleasant, and Maddox is going to hate it. I mean hate it.

And yet I know that Maddox isn't fighting any life threatening disease, he doesn't need the tube for life and he is healthy, just not eating enough, and this is short-term. I know parents facing much worse things than this.

well, that's what's going on around here.
We did a week of school this week, and it was so fun. I am getting excited for the fall. Maddox is older now, and it's a bit easier to do some school when he is awake, and he enjoys getting in on some of it, especially the arts and crafts. This is going to be a good year.