Thursday, September 26, 2013

What it takes.

Ever wonder what goes into that tube of Martha's?

Martha has been on an elemental formula (Neocate), since she was three months old. Elemental means that the food is already digested and broken down. Why she's on it is still somewhat of a mystery.

Martha went from breastmilk to several kinds of thickened formula. Then something so severe happened with Martha's digestion that it put her in the hospital. She began vomiting after every feeding so that it would block her airway. I couldn't take her out of my sight. I carried a bulb syringe in my pocket to clear her airway when the formula would come up.

Sometimes, if I left the room and came back, I'd see Martha drowning in her own secretions, turning blue. I'd tip her upside down to let the formula drain from her nasal passage. I'd stick the bulb syringe down her throat to get her to gag enough to vomit.

I had the steps to infant CPR taped on my fridge.

Shortly after that, she started having diarrhea with the vomiting and developed an aversion to eating. She lost weight and was diagnosed with Failure to Thrive. This is when she was hospitalized for the second time and put on Neocate. Neocate works, so there hasn't been a lot of investigation into what exactly caused her issues .

The problem with Neocate is that even though Martha's doctors consider it medically necessary, Martha's primary insurance won't cover it yet. We're in the process of appealing that decision. Thankfully, Martha has Medicaid as a secondary insurance because of her chromosomal abnormality. Where this gets tricky is how the funds for Medicaid are distributed. Because Neocate is an infant formula, and because of Martha's age, Medicaid will not cover Neocate either.

Do you know where the funds for infant formula are funneled for Medicaid?

The WIC Program.

Do you understand what that means?

It means that every month I have to go to the Public Health Office at the county, give personal information to the Public Health Office, and get nutritional counseling for my daughter (who does not eat), as well as have her weighed and measured.

It is astonishingly humbling.

I need to be careful now, because I have no intention of complaining about the WIC office. Truthfully, they have been incredibly kind to us. They want to help Martha, they are here to help her, and I'm thankful. The people in this particular office have an uncommon amount of understanding of what it takes to care for a special needs child with a feeding tube and seem to really appreciate the effort we're taking. For that I'm grateful.

Why go through all of this, you might ask? Why go through the extra phone calls to order formula, paper work, blood tests and weight checks? One. More. Thing. To. Do. One. More. Step. To. Manage. 


Is it worth my time? The headache? The humility?

There is a very good reason why our private insurance is trying to milk every month they don't have to pay for Martha's Neocate.

It's because it's incredibly expensive. In fact, it's more money to feed Martha in a month than the entire rest of our family. It's like a mortgage payment. And as she requires more nutritionally, she will require more formula.
(Pantry closet with an extra "Mic.Key Button," box of Neocate, and box of formula bags)

Acquiring Martha's formula is indeed one of the more stressful things I need to do for her. She's only allotted so much per month. If I don't have Martha's formula, Martha can't be nourished. Neocate is hard to supply, and only certain pharmacies and medical suppliers will stock it. If we run out, it is very serious. A baby who is unable to eat and a mother who relies on others to make sure her formula will be available is one of the heavier responsibilities I carry. If I could go out and buy all the inventory of Neocate available, I would, but it just doesn't work that way.

Of course, the natural solution to this is to teach our Cosita to eat. In time. I have some hope.


Abby said...

Ah, that innate, overwhelming maternal need to keep our kids well fed and warm.. I can see why it would be so consumingly stressful! Thanks for yet again another awesome insight. I appreciate you being so humble and open with us.

Mallory said...

Thank you, Abby.

Yes, I try very hard not to think too much about natural disaster or government shut downs. I don't want to get paranoid here, but it's definitely a consideration with an atypical situation.

As always, thank you for the encouragement.

Peter&Rebecca said...

Mallory, as I read your story I can only imagine the burden that you bear on a daily basis. Please know that your and your family are in our thoughts and prayers. You are a beautiful woman and your daughter is so blessed to have you in her life!