Children's Hospital in Denver

Hadley is regaining strength little by little every day. She is doing such a good job breathing on her own, but they are looking at two things before extubating her. 1) Her negative pressure, or the air she breathes out is not quite up to the level they want yet and 2) She's drooling so much that they are afraid she is not strong enough to swallow yet, and upon removal of the tube they don't want her drool to go into her lungs. They let her breathe on her own for an hour today and even though she did very well, she seemed a little fatigued by it, so they will probably wait another day and try it again tomorrow. The minute that tube comes out, I told her to watch out because I am coming in like a hurricane to scoop her up. I haven't been able to hold her since last Friday. *sniff* When I was washing my pumping supplies in the sink the other day, I found myself rocking back and forth in her favorite comfort move.

Here is a good analogy of what she is going though:Botulism is what gets injected into Botox patients because it kills the nerve endings and doesn't allow the muscles to move. Ultimately this is what has happened to Hadley. The toxin in her system started killing her nerve endings turning her into a rag doll. The medicine has started to kill the toxin, but once the nerve endings are dead, they need time to regenerate and depending on where they were in their life cycle is how long the recovery is. She gains back more movement every day. Just tonight with her Nana here, she started smiling and laughing.

We could not possible be in a better hospital. Not only is this brand new facility beautiful, but the staff is amazing. When we first checked in, I joked about how gorgeous everyone was. I felt like I was on the set of a tv show. First a hot male nurse brought us into the ER, hubba hubba. Then an even prettier woman came to give Hadley her IV. Even the resident who kept coming in to ask us questions over the 6 hours we were there was a Hottie McHoterson. And they are not just beautiful, they have great nurturing personalities. Yesterday morning, the ER nurse saw me in the cafeteria and came over to ask how Hadley was doing. She relayed that they were all so stumped by her condition, but they had heard she had botulism and they all started reading up on it, and studying the information so next time they would be better informed. Then yesterday afternoon, the young resident from the Short Term stay ward where we started came down to see how she was doing too. They get cases on that floor like asthma, severe colds and rashes, not usually something so serious. After listening to him talk about how he keeps reliving that day, I realized that it was a bit of a whirlwind for them as well. Last Friday night, Hadley's pediatrician stopped in for the ENG test and stayed for over 2 hours with us until we found out the results. And just today, the pediatric nurse from the pediatricians office who recommended that I come to the ER, came to visit with a present for Hadley. She had been so worried about us that she called the hospital every couple of hours the first 2 days we were here.

I've also received visits from the nutrition, lactation, and child development specialists, all with great information on what we can do for Hadley. Child development brought in lullaby's to play for her and a mobile to put on her crib. This woman was so giddy over this mobile because in the 10 years she has worked in PICU, they couldn't find a mobile without all of the plush animals on it that could not be washed. This is plastic and they made colorful laminated cards to hang from it.

So we are well on our way to recovery. Thank you so much for all of the emails of support. It's like a big giant hug from everyone we know, making us feel so loved. My dad told me that he would start feeling better when I feel better, and I feel great. So rest assured that we WILL make it through this.