
By Amber DuBois
We are home! Hooray!
OK, in fairness, we've been home for a while now. We left Children's Hospital on January 26, at about 6 PM. It was a very strange day--it was both exciting and thrilling to take her home, but a little sad, too--the easy part was over.
I know. That doesn't make sense--the thing is, while being in the hospital with your child is scary and emotionally difficult, in some ways it's easier. You have nurses and doctors who are there around the clock to watch your kiddo and help you with whatever you need done. If her heart races, they're there to figure out why. If she spikes a fever, they're there to find out why. There's a monitor right over her bed that tells you all of those things and beeps conveniently when it needs attention.
So then you take this kiddo home--this kid who you almost lost to the whim of fate, bacteria and inconvenient biology, and there you are. They don't gradually wean you off the monitors and their helpful informative waves and numbers. They don't ramp you off the nursing and the closets full of clean linens, gowns, masks and gloves. They tell you "We are discharging you today" and then you are discharged.
Before I make it sound all bad, let me just point out that we were packed up, standing outside of our room, holding my little monster as tight as I could and WAITING for the doctors to discharge us for about 20 minutes before they did. Comfort be damned, we wanted OUT of there.
But, you know, it's a lot like taking her home for the first time was. There is no instruction manual for a newborn and likewise there is no instruction manual for the medically fragile child. We found out shortly before discharge that Beeka aspirates (inhales into her lungs) virtually everything she drinks. She cannot drink any fluid thinner than honey. She cannot drink even THAT fluid through anything other than a special sippy cup that we had to order online. This makes it hard to keep her hydrated, and she has kidneys that we can't risk failing again. She also has high blood pressure and we have to medicate her for that--at least for a while.
So, she came home with a tube that goes in her nose and into her tummy. It's called an NG tube, and it hooks up to a pump, which hooks to a bag full of plain ol' tap water. Four times a day, for two hours at a time, I turn on the pump and put 200 mililiters of water into her tummy. And then she pees like a water fountain and her pediatrician (and her Mommy!) are happy.
I wrote that last line and considered how different things have become in the past two months. It's like we took 40 days out of our lives--not really a vacation, just a 40 day freak-out. And now we're back, and different things have priority. Pee...pee is a priority. We talk a lot about pee. We talk about pee and phlegm. Shortly after we got home, Peyton got sick--respiratory sick. She has a phlegmy cough, so we not only talk about Beeka's phlegm, we talk about Peyton's phlegm and what that means for Beeka. I guess, actually, it's not that much different from regular motherhood. We're still talking about bodily fluids.
But, we're home! And things are getting back to a different kind of normal. And I promise--no really, I do--next week, I'll bring back the funny! Thanks for all the support and prayers--we're convinced that it all made a difference to our little Beekster.







