Aurora has had some recent episodes with vomiting, and each has landed us in Boston Children’s for a week or so at a time.  The most recent one happened after we had a wonderful time at dinner and the Nutcracker with our friends, luckily it happened after the performance, so we did get to enjoy ourselves. It was the last night of the performance, and we learned there are special acts not in any of the other shows which made it even more fun. 

This recent visit along with the vomiting she had some respiratory distress which means she needed extra oxygen support while they figured out how to get her back on track. This meant spending over a week in the ICU before going to our regular floor.  If you have ever stayed in an ICU unit, it’s like living inside a fishbowl.  There are always lights on, shades open and people walking in and out of the room.  It is impossible to sleep in a place you really need the rest. When I leave our ICU room I must walk down the hall past the other rooms, and being a fishbowl, you can’t help but peek in.  The things I see other people go through makes me think about what life must look like at home for some families. How much medical equipment they must use on a regular day, how many medical tasks do they have to perform themselves at home on a regular basis.  I imagine it’s something you never get used to. You may develop a routine and learn how to do these things but day in and day out knowing its forever can be daunting.  It’s basically a full-time job. 

We are also going home with some new equipment after this recent admission.  Aurora started using Bi-Pap at night in hope that it will not make her body have to work as hard to breathe and hope to see her having more energy during the day.  After some trial and error, I think we have finally found the right settings and mask that she can sleep in.  I would love to see her feel some benefit to this. I’ll do anything to prolong the time I have with her and hope she feels well enough to get some more bucket list items done and enjoy herself while doing them. 

This admission has been a hard one.  There has been more than one heavy conversation about things you never want to hear or talk about.  One being a book called Voicing My Choices.  This booklet maps out the questions you never want to ask but must talk about. I truly think we should be having these conversations with people we love more often. The booklet included things like how you want to be comforted, who you want around you at the end, do not resuscitate and do not intubate orders, and lastly how she wants her service to look and how she wants to be remembered in the future.  In true Aurora style, she’s making her own playlist for her services. I’ll be expecting a few surprises on that list. Lots of emotions this week. 

Many of you have reached out to me about helping Aurora get some Bucket List items off her list and I can’t tell you how much that means to both of us.  This recent hospital visit has put a pause on things, but we will be getting back to planning and reaching out to the people who have offered to help.  We should be home soon after figuring some last details before we discharge. 

Lastly, Adult Prom is coming up and we are planning on being there.  We hope to have a fun night of dancing, drinking and laughing with all the people we love. Hope to see you on February 22^nd.  All the details are in the picture above.