numbers and math and ramblings

Using a feeding pump and feeding tube requires some mad math skills, which I am sorely lacking. I think my brain turns into a knot when I try to figure out something. I made a notecard and taped it to the kitchen cupboard with conversions of ml to ounces, calories per ounce, how many ml for every 4 hours he needs, how many ml in a cup, how many ounces in a cup. Holy cow. I feel like I should go back to school to learn how to do math again.

I have so many things running through my head that I want to get down. This post will probably be more like a list. Just so I don't forget. I'll try to pictures on later this evening.

Maddox wishes Mason had the tube in his nose instead of Mason.

Maddox wants to be as independent as possible with his backpack. He does not want any help at all. He keeps his head tilted to his right shoulder because he is afraid it will hurt to move his head the other way. I am concerned he will get a sore neck. So we are trying to help him get over the fear.

Our home healthcare nurse is amazing!! We met her yesterday. She'll come twice a week for 3 weeks, then 1x/week after that. And the best part....She will replace Maddox's tube if it ever gets pulled out!! I will NOT have to do that. We were told that homecare nurses typically don't put the tubes in kids' noses. That is why I had to learn how to put it in myself. Oh my gosh. That is a HUGE answer to prayer. Our nurse also said that in the notes she has from the hospital, they stated that I "wanted" to put the tube in. Oh man, no I didn't. I seriously do not even remeber putting it in. I remember starting to put it in Maddox's nose, then I remember the nurse telling me I could stop, it was in. That is all that I remember. I had prayed for weeks that God would just take over my hands and guide the tube and HE did. I will only put the tue back in if it is an emergency, but there is no way I will do it if I don't have to.

The child life specialist at the hospital gave Maddox a pink bunny with a feeding tube in it's nose. She brought it into the procedure room for the placement of the tube. I am completely creeped out by it (probably because it reminds me of the procedure) and Maddox cannot even look at it (although he wants me to keep it in Craig's and my room because it looks cool like him). Just thinking about that bunny gives me the shivers. It's like that postal commercial with the clown doll that kept getting closer.

When Maddox saw himself for the 1st time in the mirror at the hospital he said (very quietly)"I look kinda cool". I asked him if he thought that's what astronauts look like in space (my cousin' Alyssa's idea...Thank you Alyssa!!!) and he smirked and said "yes". So last night he was looking in the full length mirror and told my sister "I look like an astronaut". He pretends his backpack is a jet pack. We also told him this food will give him superpowers (my friend Chris at work gave me that idea) and that he will almost have as many superpowers as me and he will run faster and be stronger and taller. He likes that idea and last night told my sister :"I look like a superhero. But I'm not. I don't have superpowers. But I'm not a superhero".

There was a huge fiasco with getting his formula. They kept switching it to Peptamen from Elecare. I was at the teaching appt and Craig was in the room with Maddox. He just happened to pick up a can of the formula and read the ingredients. The third ingredient was "Whey from cow's milk". The Dr. came in and Craig told him and the Dr tried to convince Craig it would be OK and we could stay another night to see how Maddox tolerates it. Craig got him to switch it back to Elecare. When I got back from the teaching and Craig told me, I was in a panic. If Craig had gone to the teaching and I had stayed, I don't think I would have read the ingredients because everyone knows he has a very severe dairy allergy. And they would have fed him the formula before we left. I went to the nurses station and was in tears about it. There is so much advocating Craig and I need to do with the food allergies (as well any other family with food allergies) and we need to be on top of things all. the. time. We can't even trust the professionals.

The thing with the Elecare formula is that it only comes in powder form. And he needs his bag filled every 4 hours. Even at night. It's ironic. We just barely get sleeping through the night, and now I am up every 4 hours feeding Maddox. And the other ironic thing is I exclusively breastfed him for 8 months and now I am mixing up formula and warming it up at night and that is pretty much his sole nutrition now. Once we are down to just night feedings, that will be easier. It's like having a newborn again. I have to plan around the feeding times and if/when we go out I'll probably have to bring formula with. But Maddox doesn't like the formula cold, so I'll need to figure out something.

ta ta for now. time to make supper. (choc chip pancakes and bacon)