Sedation Sally

I forgot to mention that after Hannah's visit to the Comfort Zone, we came home with two doll "patients" and an IV kit (minus the sharp!) that the child life specialist gave us. Isabelle, our resident doctor and nurturer of all things big and small, immediately decorated her doll (who I've dubbed Sedation Sally) and then gave it a full medical work up as you can see in the photo. Hannah on the other hand was more interested in practicing her cutting skills on the gauze and didn't do any kind of "pretend play" doctoring with her patient. I mentioned this to my dad who said, "Well, why would she? She has to endure the real thing." Hmmm, good point.

March of Dimes: Our 5th year walking

We had a great time walking this year! We weren't sure we were going to make it, as the girls both came down with a nasty stomach bug just two days before and I was waiting with bated breath to see if it tore through the rest of the family. Thankfully by the morning of the walk, we were all fine (albeit a little tired) and the weather was cooperating as well. This was also touch-and-go, as we got a freak late April snowstorm just a few days prior, dumping over 6" of snow on our green grass and budding trees and flowers. But the sun was shining, the temps were close to 70 and everyone was healthy.

Thanks to the generosity of our family and friends, I raised over $1800! Next year I'll have to organize a team so we can have even more people fundraising (and walking) along with us.

If you were one of my donors, THANK YOU for your support. This cause is close to my heart and it means a lot to know you helped contribute to the important work of the March of Dimes.

Happy spring!

Sedation update

Just a quick note to say thanks to those who sent along their support and to let you know that the sedation went really well, Hannah was a total champ. She was fascinated by the IV insertion and watched the whole thing (thank God for Emla cream so she didn't feel any pain). She definitely had moments of being a little anxious as there were so many people coming in and out of her little "pod"--anesthesia resident, nurses, child life specialist and when Dr. B came to test her range of motion before the procedure she kind of freaked out, afraid he was about to do the shots. But otherwise she did fine. When she woke up from her little propyphol (sp?) nap, she said, "Why didn't Dr. B do the shots?" When she realized it had already happened while she was asleep, I think she was pretty relieved.

It was a little more difficult for me...just being in a very hospital-like setting, seeing the heartrate/sat monitors again, seeing one of our former NICU nurses who was our nurse at the Comfort Zone, watching Hannah "go under"; it was definitely a bit traumatic and also made me think more about what it will be like if/when Hannah has surgery, which is a very real possibility.

But overall I think it was worth all of that so that Hannah didn't have to experience the pain of the multiple shots.

Damned if you do...

So tomorrow we try our first round of botax under sedation. We did 4 rounds without anything and Hannah got progressively more anxious before each time. The last time she was in tears just leaving the house and then again when we arrived at the clinic. She has also generalized her anxiety to all doctors' offices/appointments and especially exam tables which she calls "shotter tables." After this last time, her physiatrist said we should consider going to the Comfort Zone, the place at the Children's Hospital where they sedate kids for procedures that would otherwise cause too much anxiety/trauma. They have child life specialists and nurses trained in ways to reduce the stress of the experience by doing things like blowing bubbles and using Emla cream at the site of the IV placement so the kiddos don't feel it going in.

It all sounds great, right?

But there is a downside to everything.

Because she will be under anesthesia, Hannah had to get a physical within a week of the procedure. She also can't eat or drink after midnight tonight. We have to leave the house at o-dark-thirty to be there an hour before the procedure. And it's yet another doctor's appointment, this time in the hospital, and there will still be anxiety and stress as it's new and strange and different. She will undoubtedly ask many times on the ride there, as she does when we go to ANY doctor's appointment now, if she will be getting a shot. And she'll be hungry and cranky and tired because we got up so early and she couldn't eat. And who knows how she'll be when she wakes up.

The alternative?

Another round of 6-8 injections into her leg muscles without any sedation. Five minutes of screaming and crying followed by more anxiety around future appointments.


Neither option sounds so good, does it? And we get to do this 3-4x a year.

Welcome to my world.