Between Madi's hospital stay post-transplant and Sydney's hospital stay post-transplant, I imagine that I have spent enough time in the Cardiac ICU at Mayo to call myself something of an expert.
What does that even mean, you say?
Well, for one, I know where the best places for phone reception are. What times the echo techs generally come around. When the teams do their morning rounds. Where the "treasure chest" is located. My feet have worn a path around the unit from days of pushing strollers or pulling wagons in endless loops, hoping to soothe an irritable child.
I hear about other hospital programs, and consider our family very lucky to have been guided to the Mayo system when we started our whole journey. A Cardiac ICU is not a fun place for a family to be, but if you have to be there, you may as well make the best of it. I so wish that all healthcare systems worked the way Mayo does. Every morning, when rounds take place, you are reminded over and over that these people really care for your child. As you stand there and listen to the daily pow-wow between cardiology, neurology, hematology, pharmacy, dietary, occupational therapy, physical therapy, and the intensivist, you know without a doubt that your child is getting the best care possible. Each and every day, all of the members of your care team meet and discuss your child. They make adjustments to their care plan as needed, and make sure that everyone's on board with all decisions made. It's like having a care conference daily, and it's unbelievably reassuring. As a parent, the fact that I was always included was a big deal too. It made me feel like my input was always important as well. They validated my feelings and concerns and made sure to help me in any way that they could. When you have a child that's been through what my children have been through, the security that brings is immeasurable. When you have team-based care, the mistakes are few and far between (and in my case, for both of my children, there were no mistakes made whatsoever) because nothing is done without everyone else's knowledge.
And the nurses! Oh, what can I say to convey to you how great they are? Besides taking the very best care of my kids that they could, they all truly made me feel like they cared about our family as a whole. It warms my heart still to think of the special people who took my girls under their wings. There were times when I'd pop by the unit on my way to lunch or something, and see a nurse sitting with Sydney reading her a book, or singing to her. At night, when Sydney was restless and unable to sleep, they'd gather her into their lap and rock, positioning all of her monitors so they could see them while Sydney watched Toy Story for the bazillionth time. Every morning when I came to the room, she'd be freshly bathed, with a pretty bow in her hair, lips glistening with Chap-Stick. (That hospital air gets dry, ya know!)
When we finally left the hospital, I cried. With both girls. Tears of relief, yes. And tears of joy that we'd made it this far. Of course I was terrified, too, to be taking care of these newly-transplanted kids on my own. But you know what's funny? A great part of those tears were because I was going to miss the people that I saw every day in that ICU. So weird, I know. When your child is hospitalized all you can think about is getting them well enough to leave. And then when the time comes, you almost don't want to leave. Almost. It's like saying goodbye to your family members.
To this day, if we have time, we stop up to "the unit" when we have the girls in town for their checkups. The girls are always the stars, and everyone peeks out of their rooms if they can to say hi. It's so nice to know that even if we aren't inpatient anymore, Madi & Sydney have touched their lives somehow. I'm glad the girls can do that. I think they were both put on this Earth to make a great impact. With a dream team like the one they have at Mayo, they are well on their way to a long and successful life.