B is for botulism

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.

Dreadful

And I think I’m going to start a whole new blog. Ha! I can’t even post once a week. And it’s only going to get even worse come January 3. Speaking of which…

I feel like I swallowed fish hooks. There’s an overbearing feeling of depression and dread, which  makes one hell of a cocktail. I’m trying to shake it off so I can enjoy these last few days. I don’t want them to speed away. Blue is home this week, which makes it even better. He asked me if I wanted to take a day or afternoon away to myself. Are you kidding me??? Come one week I’m going to be away all the time. I’m trying to soak up every second I have left.

As far as my plan, it’s not exactly what I wanted. My big boss will only approve two days a week at home. Part of me wants to scream and get pissed, especially since other members of my team have been granted way more flexibility and I think I’ve proven myself as a dedicated employee. Especially considering many a night I was there just as late, sometimes later, than him.

But as annoying as it is, I can understand his concern. No one else on my team has a newborn and as a parent, I’m sure he’s thinking that it’ll be difficult for me to come back to work, and there’s a danger with me being at home, even with a nanny/sitter. I get it. But it still pisses me off.

So now my mind is racing in a thousand directions. For one, it’s going to be more expensive because she’ll be there longer. For two, I now have to schlep her out three days in the cold, possibly snowy weather and speaking of snow, there’s more fear that she’ll be at the sitter when a snowstorm strikes. I’m afraid I’ll get crap if I want to leave early to go pick her up (btw, other members of my team have often left midday with no problems). This is a huge concern because the only other vehicle we have is Blue’s van and that is not good in snow. He’s also having misgivings about picking her up at all, which really sucks because now he’d have to do that three times a week. I don’t want her at the sitter until I get out because besides being expensive, she’ll have been there for 9 hours.

Ugh.

As much as I didn’t want to do daycare right away, I’m beginning to hope and pray that we get a call that there’s an opening way earlier than anticipated. It would just be so, so much easier and less expensive. My boss right above me did say that maybe in a couple weeks if it all works we can go to three days but who knows.

Besides just the logistics and the thought of being away from her for so long, I’m dreading returning for other reasons. Everything seems kind of up in the air with my department and I’m still not completely confident in my job security. Being away for two months, puts me at a disadvantage. I have to readjust to the work flow and now I have a baby so I’m not certain how that will affect my performance. It might be a hard transition at first and I wonder how much room for error I’ll be given.

Then there’s the temp who covered for me. It’s not certain whether she’ll be staying, even though another member of the team is leaving. We’ve cut way back in production since I left so they have to get the position approved from high up, even though it already existed. She’s a great girl and I’d hate to her have to leave, and I also wonder, what if they decide to keep her versus me? Legally, they can’t fire me right away but what if I go back and I’m not as good as before and they get rid of me?

Blue and I have talked about it. If things don’t work out, I’ll stay at home. But that’s an option that’s way on the back burner and not ideal (well, in one major way it is) to either of us.

I know I worry about everything and that a lot of this is just stemming from my fear of leaving Floyd. Once we get in the swing of things it’ll all work out and become the norm. I know that. But right now, my mind is racing in a thousand neurotic directions. I need to make it stop so I can spend the next few days enjoying the time I have with my little family.

Besides all that, I hope you all had a great Christmas. Mine was good and I even got some sleep. The last three nights Floyd slept for long stretches — six, then four, then five hours — and the last two, she was asleep before midnight. Woot, woot!

Well, that’s all for now. I’ll try to update sometime soon but with work coming up, who knows. Happy New Year!