Namine
Namine Olivia Eiche was born on July 15, 2008 with a double-inlet left ventricle heart defect; Pierre Robin sequence, a condition that resulted in a regressed jaw and a partial (U-shaped) cleft palate; caudal regression syndrome (also known as sacral agenesis), which damages the growth of the tailbone and legs, also giving her clubfoot; and scoliosis.
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Improvement, now with ketchup
Namine seems to be getting a little better, now that she’s on the Tobi nebulizer and a steroid to help keep her wheezing down. She’s only coughed once since I put her to bed, and she didn’t even need much suctioning. Between finishing the breather and putting her to bed, though, she coughed up quite…
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Trach infection pretty much confirmed
As we count down the days toward the result of Namine’s sleep study, we have a new wrench thrown in the works: a trach infection.
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Possible trach infection
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…
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Another trip to the ER
The saying goes that every gray cloud has a silver lining, but I think the reverse is true as well.
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Picnic day, part 2
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.
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Horse therapy
Yep, you read that right. No, it’s not therapy for horses; it’s therapy for humans – Namine, specifically.
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Picnic day
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.
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After Namine’s sleep study
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…
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Sleep study
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…
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Fair weather
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…
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So close, yet so far away
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…
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OrthopIDIOTS
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.…