Friday, September 7, 2012

Nervous

Sleeping beauty and her prized 60ml syringe package
(Look at all of that hair!)
Fortunately, Norah's positive result for MRSA was merely a colonization. MRSA is everywhere in hospitals, especially long-term care facilities. It is a low-ish population, and she hasn't shown any signs of infection. We're relieved, but we also were never super worried to begin with.

Norah has been feeling better in the last week or so, but has been fighting naps lately. She gets pretty crabby when she's tired, and it's so difficult to not give in to her tantrums. I love when I get to experience typical parenting woes instead of only being buried in the intense worries that come with a medically fragile child.

On the topic of worries... Norah's soft palate (the back of the roof of her mouth) cleft repair is scheduled for Monday September 24th. We're nervous, but mostly because it's a full surgery with full anesthesia. Her ENT Dr. Jeremey Meier (who also performed her trach surgery as well as countless bronchoscopies) is one of the few local pediatric ENTs that do the cleft repairs, as opposed to referring out to plastics. We adore him, and like so many of Norah's specialists, Norah is one of his favorite patients. He will do what's called a z-plasty (which will also stitch together her split uvula), which is considered the best treatment for a cleft in the soft palate. He said if all goes well, she hopefully won't need a follow-up surgery. I'm glad it's just her soft palate, which is all soft tissue, as opposed to a hard palate, which is bone. Oh - and a word to the wise: I would not recommend a Google image search for z-plasty, unless you have a high tolerance for graphic medical images. Even when adding the search term "cleft", it will pull up some non-oral images that are quite graphic... even some of the oral images are graphic for that matter.

I talked to a nurse friend (Cecily of course) who has made several trips to Guatemala with Hirsche Smile, a team that does charity palate repairs. She said that those kiddos typically only get Tylenol to ease their post-op pain. Yikes. So we consider ourselves fortunate to have access to such great medical care. Norah will certainly get more than Tylenol, and as usual, Cecily helped calm my anxieties. When our family is in a better financial position (likely to be far, far, far in the future), I sure would love to donate to a cause like Hirsche Smile, to help them give care to kids that were born to unfortunate circumstances, with few places to turn for help. When I see these families, I feel guilty for feeling like our own financial situation is bad. I suppose it is hard for us, and that's what matters, so long as we maintain a humble world perspective.

As far as recovery time goes, we're not yet sure. It could be an overnight stay in the PICU, or it could be a week. Dr. Meier said he'd ideally like to see Norah back to her baseline and feeling great before she goes back to South Davis.

On a lighter note, who would like to see Norah play with her suction tubing?

video

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