Tuesday, December 31, 2013

Mystery Girl

The mystery of Maggie's mouth continues.  To recap, when we first met our little lady, she had a very strong smell coming from her mouth.  When we arrived home, our adoption doctor discovered a patch of white/yellow gunk up in her palate. She was treated for thrush with no success.

We followed up with her dentist and our pediatrician, who suspected a bacterial infection in her mouth. She also was diagnosed with a staph infection on her skin and we weren't sure if that was related to her mouth.  She was on a strong antibiotic for 10 days, during which both her staph infection and her mouth greatly improved.

However, once the antibiotics was finished, the patch came back in her mouth and the smell came back. One reason why this concerns us is because we were worried whether or not the gunk being there would affect her upcoming surgery.  Our other concern was that when the gunky patch is bigger, it irritates her and makes it hard for her to suck on her bottle. Since she doesn't eat solid food yet (just baby food and formula), it's a big deal when she only takes in about a fourth of the amount of formula a day than she would otherwise. It makes her irritable, probably because she's hungry.

We have been in ongoing conversations with her doctors trying to solve the mystery.  We saw our pediatrician again last week, and she was able to culture part of the gunk. We're still waiting on for those results.

In the meantime, our pediatrician talked to Maggie's plastic surgeon on Friday, who wanted to see her right away.  So I scrambled to arrange childcare for the other 3 last minute, and off Maggie and I went to the hospital. Thank goodness I don't otherwise have a life!

The surgeon believes that the gunk is simply food and mucus that accumulates in the open space in her palate. He said her mouth anatomy is very unique, so it's basically a catch-all for anything in her mouth. He was able to clean some of it out and said we could also use long q-tips to clean it out as needed. He sees no concern for her surgery at all, which is a relief.  And stuck food is much less of a concern than an infection of some sort.  So I'm really hoping he's right!  And if he is right, I really wish we had figured it out weeks ago!  We're still waiting for the results of the culture to be sure there's no infection.

Since then we've tried to keep it cleaned out but it has grown back since he was able to knock some loose. She continues to fight the bottle and be pretty fussy.  Is it the patch that's bothering her? Or something typical for her age, like teething? Or just still adjusting to her new life?

In hindsight, IF it's been food in there all along, it's frustrating that we've put 3 different meds in her body trying to treat it, not to mention the various appointments, countless phone calls, money and time we've spent trying to solve the mystery.  But such is life sometimes.  The difficult part of dealing with a cleft lip/palate is that there is not ONE main doctor to treat that. She has a team of doctors and when there's an issue, there's a certain chain we have to go thru to get to the bottom of things.  That's a good thing and a bad thing. I'm thankful there are so many professionals putting their heads together and caring for our girl.  On the other hand, they often have varying opinions.  And I sure wish they could all just look at her at one time in one place rather than chasing down each one individually.

We'll hopefully get the news from the culture back on Thursday when our pediatrician returns after the holidays.  If it shows no infection, then we'll just continue to help her as much as we can for the time being.  I keep reminding myself that this is temporary as her palate surgery is only 5 weeks away!

In other news, we've continued to just stay at home for the most part. It seems like this break from school has lasted forever, and they still have another week off!! I could never home school, just saying. I'm starting to daydream about that yellow bus pulling up to our drive!  :)

Our Nature Boy decided he was tired of Christmas cookies
 and asked if he could gnaw on a broccoli stalk instead.  

How Jeremy deals with Maggie's fussiness.  She's happy to hang out on his back.

Girls in the handmade outfits they received at gifts.

 First visit to Grandma Toodie's house!

 Grandma Pat has her lap full. :)

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