YAY Botulism!!!

Hadley did really well last night and remained in stable condition. This morning, they put a feeding tube through her nose to her small intestine and started giving her 1/4 ounce of my pumped breast milk every hour. At 10am this morning, when the infectious disease doctors came to visit they told us that her stool sample lab results, which they had not expected to get for 2 weeks were back. The results were positive for Toxin A, which meant that she has botulism. At this point, with 2 tests pointing to it, we rejoiced. YAY botulism! At least now we could work on curing her. The medicine, or white diamonds as we referred to it, got to us today and was injected around 1pm.

Having been sedated for most of the night, she slept a lot today only opening her eyes a few times to say hello. Mostly she cried, or should I say her lips made the shape of a cry, and tears came out, but there was no sound because of the tube in her throat. Because I can't hold her, there was a lot of hand holding, whispering in her ear and singing.

Even though I am sure that a lot of you have googled this disease, here are a few things the doctor's are saying. 100% of children who get botulism recover. There are less than 100 cases of infant botulism in this country every YEAR!!! (I'm thinking we need to go play the lottery as well.) Infant botulism is an airborn spore that usually comes from being exposed to new construction, or someplace where a lot of dirt is being rustled up. It can also come if a child were to ingest honey. However, since the 70's there are only 2 documented cases to base this on. Hadley has not received anything but breast milk supplemented recently with some formula and there is no construction around us. In the majority of the cases, patients never figure out how they got it. So we need to stop focusing on it, stop wracking our brains, looking for the cause and look to the future of her getting better. Ultimately, the medicine is supposed to kill the remaining toxin, allowing the rest of her nerve endings to begin regenerating. In most cases of botulism, without medicine, recovery can take up to 52 days. This serum is supposed to cut that time in half. The effects however are not immediate and there is no telling how long it will take. We are also in that top 4 best Pediatric Hospitals in the country. We have one nurse who sits outside the room and monitors us all night long. It is very reassuring.

Just now tonight, we had an hour of open eyed alertness. It was the best I have seen her in over 48 hours. I think she may even have tried to smile a few times. She has been such a trooper through this whole experience. Other than her general discomfort, she seemed to enjoy the attention she was getting from everyone and never let out a peep when different doctors came to examine her every few hours. She has been such a good girl.

Thanks so much for keeping us all in your thoughts, it has been very comforting.