Botulism

On Tuesday, after receiving her 4 month immunizations, Hadley started to become very fussy and refused to eat. The situation worsened Wednesday when she was even refusing the breast and her ability to swallow seemed impaired. She had also started a low and constant moan. Thursday morning, I took her into the Pediatrician thinking it was just a side effect of the shots. They noticed lethargy and her head was flopping around, so they sent me to the ER of the brand new Children's Hospital which just opened last September. We were checked into the ER Thursday morning by 10:30am. After hooking her up to an IV, they sent us to an observation room by 5:00 pm. After hours of watching us, all of the interns, residents and attendings were stumped, so they decided to admit us. After less then 3 hours of sleep, and excessive amounts of crying we woke up this morning and Hadley was even worse. She hadn't eaten in days, she couldn't raise her head and she was pretty much a rag doll. Everyone had no clue what was going on, so they started doing tests to rule out the possibilites. This morning she had a catheter put in to test her urine for a UTI. Negative. Then she had a CT scan which showed her brain was normal. This was followed by a spinal tap which again showed the fluid to be normal. She was poked with needles, prodded by all 30 doctors that came to see her. She slept through her enema. Then they started to entertain the idea of botulism. This is a rare air born illness which attacks the nerves (like Botox). The head Attending physicians of Neurology, Center for Disease Control, and NICU all came to visit us asking the same questions over and over. No one had answers. Finally, they had one final muscle test to give her. After an hour of moaning, they puzzle pieced their info together and it appeared that she did indeed have Botulism. I won't go into the nitty gritty, but ultimately, this one test that they were not sure would work, ended her pain of further tests. Relief for us. There is one company in the country that makes the medicine for this disease and they are over nighting it to the hospital. Let's just say that one dose is half the price of my first condo.

Right after this assessment, ICU came up for an evaluation and decided it was best to move her to monitor her more closely for the night. So here I am, sitting here, watching my baby girl, hooked up to machines, intubated, and a shell of the smiley playful girl she was just a few days ago.

The past 37 hours have been some of the worst in my life. I am living in a panic attack, unable to pull it together and realize that this is my life. The good news is that botulism is curable with no long lasting side effects. We could potentially be looking at a few week stay in the hospital. At this point, nothing in this world matters to me except this little girl. She is what I live for and I am humbled as I am nothing compared to her.

As such I am not sure when I will post again. Please keep us in your thoughts.