Eiche fam

Pierre Robin Sequence

Pierre Robin (pronounced “Roban”) Sequence or Syndrome (PRS) is a condition present at birth, in which the infant has a smaller-than-normal lower jaw (micrognathia) or set back from the upper jaw (retrognathia), a tongue that falls back in the throat and obstructs the airway (glossoptosis), and difficulty breathing. Most infants, but not all, will also have incomplete closure of the roof of the mouth (cleft palate), and is commonly U-shaped.

  • 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…

  • 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.

  • 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…

  • 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.

  • 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…

  • 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…

  • 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…

  • 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.…

  • Coughing fits are nothing to sneeze at

    Namine was up all night a couple nights ago, coughing and hacking. She didn’t seem to wake up much – a few times crying, but I was able to sooth her back to sleep – but I doubt she got much rest. Last night was much better, she only coughed a couple times. She slept…

  • Plastics appointment

    Namine had an appointment this morning with her plastic surgeon, Dr. Denny, the man who did her jaw distraction and cleft palate repair. He has declared her palate completely healed, and she can eat whatever she wants again. Well, within reason.

  • Fever

    Last night, Namine had a fever of 103. We called the doctor, and they said not to be overly concerned unless her fever topped 104. This morning, her fever was only down to 102.5. So we took her in to the doctor’s office, and they said to keep an eye on her, but we don’t…

  • Club foot repair canceled

    We got a call this morning from Children’s Hospital. Due to the weather, Namine’s orthopedic surgeon, Dr. Thometz, would not be in today. As a result, her surgery is canceled. They will reschedule sometime early next week.