Infant Botulism Recovery

Everyone has been so kind and wonderful with their emails. Thanks to everyone for their well wishes. I will continue to try and update the blog as I am finding it a bit cathartic to get my thoughts written. I wait until she is asleep at the end of the day to start.

Hadley woke up at 8am with big eyes ready to take on the day. By then they had increased the amount of breast milk being fed to her to 1 ounce an hour. This is a lot for a girl that normally only eats 18-20 oz. a day. But they need to make up for the days that she was unable to eat. Thursday and Friday I had been attempting to feed her using a dropper, like a little bird. By Friday morning however, after an ounce, she started choking on it, so they had to suction out her mouth and nose. There were afraid that her inability to swallow would push the liquid into her lungs causing other problems, so we were not allowed to feed her any more. They told me she would have to feed off the fat of the land, which when you look at her little chubby legs, looks good. However at her 4 month visit, she was only 12lb 3 oz, and in the 25% for weight. She probably lost 1/2 lb or so over this time, so she needs the extra calories.

Also this morning, the respiration nurses told us that she was barely using the breathing tube, so they were going to start lowering the oxygen levels and talk about extubation. Initially, she needed the breathing tube because her muscles were so tired that she couldn't breathe, not at all because of her lungs. She is still so weak however, that they are going to keep the tube in until she gains some strength back and we are sure she can breathe on her own. This could potentially happen tomorrow. :fingers crossed: I can't wait because it means that I can hold her again...and never let her go, until she is 18.

She was alert for so many hours today and such a brave little girl. She barely fusses with the tube down her throat and hasn't had any narcotics since yesterday morning. She's just on tylenol now. We've noticed amazing improvement throughout the day. She tries to moved her hands, even though they are strapped down. The neurologist said that her tone was better too which means that her muscle reactions are looking good. The attending doctor of the PICU told us that recovery with this drug often takes 2 1/2 weeks, so we will be here for awhile. I told Hadley that if she would get better in a week that I would buy her a pony.

Things are looking up and since I have not slept more than 2 hours at a time since this happened, I am going to sleep in a private room tonight with a shower. David will stay in the room with her. Hopefully I'll get rested so that I can remain strong for the bravest little girl that I know. Her good temper puts the rest of us to shame.