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.
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A turn for the worse
While the cleft palate repair itself was successful, Namine has developed complications. She has had a lot more blood than the doctors expected in her stomach, which is making it upset. She almost threw up once, so they gave her something to ease the nausea. She also has quite a bit of blood in her…
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Palate closure successful!
Not long after I had finished updating the blog, Dr. Denny came out and said he was done. It turns out that since Namine was already asleep, he just started without coming to talk to us.
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And now, to wait
We just got back here in the waiting room, after they took Namine back for surgery. The operating doctor, Dr. Denny, is stuck in traffic, but he’s going to come out and talk to us before starting the procedure. We think the surgery will take about 2 hours, but we’ll see, I guess. It’s about…
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Tomorrow is the big day
Well, kids, it’s almost here: the cleft palate repair. Namine is scheduled to be taken back for surgery at 7:30, and we have to be at the hospital by 6. As we’re used to by now, she’ll only get her night feed until midnight tonight, Pedialyte until 4. Jess and I will most likely just…
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Vacation
We made it to my aunt’s house around 4 this afternoon. When I took Namine out of the car, hoo boy was she sweaty. Thank goodness the weather is nice, though. Yesterday Namine had her pre-op clinic visit, necessary prior to surgery next week. Everything is looking good, and she’s approved for the repair. So,…
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Namine: 2, Allergies: 1
Today Namine had an appointment at Children’s Hospital with the allergy people. (I don’t really know what the department is really called. I doubt they call themselves “allergy people.”) Last time, we found out that she was allergic to cheese (but we’ve stayed away from all dairy, just to be safe) and rice. Today, they…
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In the ER again
So we’re in the ER once more. Namine has pretty bad secretions and cough again, but the main reason we’re here is a little more delicate. I hope she won’t need to be admitted, but we’ll see, I suppose. We’re still waiting for them to actually do something.
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Nightly roundup
Well, kids, no new news. As far as I know, my grandpa is still in the hospital. Nothing on what might be wrong, other than a bad ear infection. As for my mother-in-law, she probably should have gone back to the ER tonight. She’s got bruises where she didn’t before, with no explanation for them,…
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Poopiness
Well I don’t know where to begin. Namine started with just more secretions and a slight fever at the beginning of the which grew to no fever, but vomiting and diarrhea like crazy. She has had probably about 7 blowouts since Friday. We have talked with her pulmanologist and the regular pediatrician and now the…
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Holy crap, an update
Yes, kids, it’s been a while since our last update. I blame hospital visits for that one.
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In the hospital again
I haven’t really had a chance before now to post on how Namine’s doing, and for that I apologize. They just kicked me out of her room so they could do a chest x-ray, though, so I guess here’s my chance. They woke her up, and she’s pissed.
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Health update
In case you were wondering, Namine hates shots. The other day, she got her Synagis shot (for RSV) – and at least one other, I’m pretty sure – but there was too much to give in one go. So even though the dosage was for a single shot, they gave her one in each leg.…