Some of you (OK, two of you) may have been waiting for an update. This is not the update you were expecting.

I’m not sure how else to say this other than to be direct – Floyd has botulism. Or at least they’re 99% certain Floyd has botulism. Actual confirmation will take at least another week.

We’ve been in the hospital now for almost a week. Tomorrow we get transferred to a rehabilitation hospital. Neo natal botulism (the official name for it) is not fatal; it just takes really, really long to recover from. Quickie explanation — it’s a spore found in soil; when it gets turned up it gets in the air and can settle on something or just float right into someone’s mouth. It’s toxic only to babies under 1, and more specifically under 6 months. It’s very rare — only 100 cases a year in the entire U.S. Basically it kills the receptors for your nerve endings making muscle function impossible. To recover, she has to actually regrow those receptors.

You’ve probably heard people tell you not to give babies honey. That is the only known way to protect against botulism. But the funny part is that’s only responsible for a tiny fraction of botulism cases. For the majority, they have no idea how it was caused. No we did not give Floyd honey.

If you’re stunned, you can only imagine how I felt standing in the pediatrician’s office expecting her to tell me my daughter had a cold only to hear “I think it’s botulism. Unfortunately this will need to be sorted out in the hospital.” If you want a good time, have your child escorted out of the doctor’s office by an EMT into a waiting ambulance during the prime time — right after school. That was fun.

For the first two days Blue and I felt like we were in the Twilight Zone. We couldn’t wrap our heads around it — how, why, when, what??? There were tests upon tests — including a spinal tap — a parade of specialists and sleepless nights as Floyd’s oxygen level dipped and nurses and doctors came running in the room suctioning mucus out of her nose and talking about the possibility of putting her on a breathing tube.

I agonized over the type of crib to get her, the mattress to use, how warm to keep her room, what I should be doing to encourage her at each step of development and the kid gets botulism. What the hell do you say to that?

I won’t get into the whole progression or all the ins and outs of the disease because I don’t have the time or energy. Basically the gist is, she stopped eating. Now we have to relearn everything. We’re being told that PA is the 2nd highest state in the country for botulism cases. This hospital has seen five since May and coincidentally there’s another baby in here with the same thing right now (that’s why they did the spinal tap). They are going to be roommates in the rehab hospital. As rare as it is, this area seems to have a lot of cases.

The antidote (I cannot believe antidote has become a regular part of my vocabulary) had to be rushed via plane from California and escorted by a courier, over night. Since then we’ve seem amazing improvement. But there’s still a lot to go. At the rehab hospital, she’ll get more intensive care. We’re hoping only a week more in hospital before we can return home.

So far every doctor (and there’s been a few — speech pathologist, neurologist, physical therapist, occupational therapist, hematologist, infectious disease control, respiratory therapy, critical care pediatrician) has been impressed with her progress and all think she’s improving greatly.

The good, good, super good news is, it’s a completely recoverable disease. She should get right back to where she was with no delays in development and no permanent damage. As the doctor said, if she was going to get a disease, this is the one to have.

It’s just absolutely mind blowing. Somehow she breathed this in from who knows where. One minute my little girl is learning to shake a rattle and the next the department of public health is calling to “just ask a few questions.”

Did I mention that today is my birthday? Last year, I was recovering from a chemical pregnancy and attending a baby shower, this year I have my baby girl and am waiting out her recovery. Next year I’m shooting for being at home with a mild cold.

Bottom line is, Floyd is doing well and is expected to fully recover. That’s the most important thing. All of the scary moments are hopefully behind us.

As I wrote in the beginning, this is probably not the update you were expecting.

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