Late yesterday and this morning, Namine has had a lot more secretions than usual. In addition, this morning her secretions have been mucusy (is that a word?) and yellow-green, and she’s been coughing and hacking. So Jess called Namine’s pediatrician and her pulmonologist for advice on what to do. Of course the first thing that pops into our heads is trach infection. We’re no stranger to them, of course, but trach infections are nothing to trifle with; they can easily be life-threatening if not treated quickly.
The saying goes that every gray cloud has a silver lining, but I think the reverse is true as well. Things had been going pretty well, so karma or whatever decided to kick us around a bit. Jess, my mom, dad, and sister took Namine to a water park today; unfortunately, what started out as a great day ended up in the ER.
I never got a chance to post about the rest of our picnic day, when we went to my uncle’s for the Eiche family get-together. Namine ate a Twinky and then took a nap on the way there. We brought Namine’s wheelchair, and she was able to speed around the deck. It was nice for her, because there was more room than in our living room, plus rolling a wheelchair is harder on carpet. Namine ate like we starved her. She ate pretty much everything we put on her plate, plus some rolls, plus nearly half my corn on the cob. (I’m pretty sure she prefers it on the cob to the little nubbins.)
Yep, you read that right. No, it’s not therapy for horses; it’s therapy for humans – Namine, specifically. The idea is that the way horses walk is fundamentally the same way people walk; the up-and-down motion, the rhythm. It’s supposed to help with balance and speech.
We went to the zoo this morning for the CHW Herma Heart Center’s picnic. Namine got a free HHC t-shirt. (siblings could get free shirts as well, but parent have to pay. What a gyp.) We saw a couple of doctors (including Dr. Mitchell!) and some other people we recognized but couldn’t place.
Kids, as much as I’d like to tell you that Namine had her trach taken out today, alas, I cannot. Contrary to what we were told by lying or possible willful ignorant trach/vent nurses, decannulation is not that simple. We have to wait a week for the results of her sleep study, and then we can go back to the hospital for decannulation.
This’ll be a quick post, because I’m writing from my phone. Namine is asleep now, but she wasn’t happy. She’s got wires all over her head to monitor her stats, and a cannula up her nose to monitor her carbon dioxide. Considering she’s breathing through her nose, I’m a little concerned. Right now, she’s statting around the low 80s. She’s allowed to go down to 75. I hope she improves.
We went to the Wisconsin State Fair yesterday. Well, I just went after work, but Jessica and Namine spent the afternoon there. It was a good day for it; maybe too good, since I think Namine is feeling a little crispy today. Despite a little sunburn and some sore legs, though, a good time was had by all.
Every single department at Children’s seems to want to call my cell first, even though we tell them time and time again to call Jessica first. So they called me this afternoon – of course I can’t see which department it is, since the number that shows up is just the main line to the receptionists. It’s been routine for me to tell them they want to call Jessica, since I’m at work; I did the same thing today.
It’s like in Home Alone 2, where Kevin’s mom asks the concierge, “What kind of idiots do you have working here??”
He replies, “The finest in New York, madame.”
The 23rd of July, a Friday, was Namine’s scheduled foot surgery, and they canceled that. They told us they would call us back the following Monday. They didn’t, so we called them on Tuesday. Guess when they called us back? Yesterday.