Saturday, May 4, 2013

Things we've learned

We realized after Lucy's close call that we thought we were prepared, when in all reality, we were far from it.  The precious seconds that it takes to plug in a cough assist or attach bipap tubing and a mask, especially with the adrenaline and panic an emergency situation injects into you, can easily mean life or death.  Machines need to be ready to be used in an instant.

Noah made sure that Lucy's stroller is now able to convey all of her machines in an immediately usable state. Suction, cough assist, bipap, pulse ox.  The suction is also easier to get to, rather than tucked away under the stroller.  Spare parts were something we always carried, anyway, but we will be doing more frequent checks to make sure everything is working correctly.  The pulse ox settings have been changed to be more sensitive.  We will also be carrying a flashlight, at the suggestion of another SMA mom, so that we can see Lucy's face if we have her out in the dark.  Most times, reading her face will alert us to a situation before a pulse ox ever could.

We also realized that trips are hard on Lucy.  Long card rides are tough, having her schedule disrupted is tough.  We have decided to change her wish from Make a Wish.  I contacted them to tell them to take us off of the waiting list for going to Sesame Street in New York.  Seeing Lucy at the Sesame Street show, I realized that it wouldn't matter to her if she was on the original set - it's the characters that matter to her.  We may try to set something up with her being able to meet the cast of the musical, or we may try to do something involving a play area for her in our yard; we need to discuss it with her.  I need to remember to focus on what will make Lucy the happiest and most comfortable, not what I think she would like (or what I would like for her.)

I was worried that she would have a hard time adjusting after this episode.  Yesterday, she was very unhappy about going outside at all, even from the door of the hotel to the door of the van, 10 feet away.  She was very clingy to her bipap.  Today, she has been off her bipap as normal, and we were able to take her out in the beautiful weather for a walk.  She was perfectly peaceful.  Resilience personified.


Jaime said...

Great post Barb and a very good reminder for all families. I find we have all of her supplies when out but often times packed deep in a bag or worse, left in the car. So glad that Lucy is back to her normal feisty self. <3