Blogging about life in Minnesota, raising our six kids with Down syndrome while battling Breast Cancer.

Be the kind of woman that when your feet hit the floor in the morning the devil says, "Oh shit! She's up!"

Wednesday, July 02, 2008

Blood work is back

I don't think I posted that Angela had a bunch of blood draws done last week. Some of them she was due for, and others we were trying to rule out stuff. For the purposes of saving my fingers, you'll need to know these abreviations:

Ped: Pediatrician

Dev. Ped: A Developmental Pediatrician- physician who addresses special needs or special care issues for children with special needs.

Ped. Endo: Pediatric Endochrinologist - physician who deals with children who have disorders of the endochrine system including diabetes, growth disorders, and thyroid disorders, just to name a few.

GI: Pediatric Gastroenterolgoist - physicial who deals with disorders of the digestive system, specializing in working with children.

ENT: Ear Nose and Throat doctor

GAH! The ped called and started off with, "I got the blood work back, and I've put a call into the dev. ped. to get her opinion before I decide what to do."

Would that make you worry if they said that?

Ok, I'm not so smart about the thyroid stuff, and I was talking to the ped while trying to say goodbye to people who were here, so I need to have her email me the numbers so I'm clear on everything, but here's the gist of it.

The T4 was just a couple decimal points below the low end of normal, but the TSH, while on the high end of normal, was still within normal limits. (I think I have those in the right order. LOL) So she wanted the dev. ped. and ped. endo. to decide which direction we should go with this.

The MN allergy panel came back normal except for ONE slight reaction to a tree that to my knowledge we don't even have around here. And, thankfully, there was no dog reaction, which was a big worry for us! Her nose is still running, but she doesn't have a sinus infection anymore. Just a clear runny nose. I did put her on claratin last week to see if it would make a difference. I think it has, as her eyes are no longer red and itchy.

Then there is this horrid cough that she's had for a month now. It's VERY phlegmy sounding, and SOUNDS very deep, yet the ped doesn't think it's in her lungs. She *is* wheezy though, and we've been nebbing every 4 hours for a couple of weeks now. But she's not crackly, just squeeky. (I know, all these technical terms. LOL)

The theory? That her esophagus is deteriorating further and she's aspirating. That she's able to clear her lungs with with a cough, but she's keeping gunk at the level of her trachea. The ped wants us to go back to the GI, who has some tests he wants us to do, along with that 3D CT that nobody realized he ordered 18 months ago! Apparently there was a consultation with the cardiologist who suggested doing this scan to see if her heart could be compressing her esophagus. Once that's done, we'll be down at Mayo to talk to the specialists there who deal with Achalasia. We've talked to them in the past, but the ped. thinks it's time to do some real serious looking right now. Also, she said the testing that was done 18 months ago will probably all need to be re-done (sleep study w/ph probe, esophageal manometry, and another endoscopy. We'll probably throw in a bronch at the same time as the endoscopy as well.) The fix for achalasia isn't a pretty one, so I'm praying that's not the direction we're headed. Angela has HUGE PROBLEMS with wound healing after ANY surgery. From the reading I've done, if she did need surgery for this, because she's had a nissen and LOTS of abdominal scarring from having the incision opened numerous times, it's unlikely they could do a laproscopic procedure.

I hate this....I hate that things just never go well for her. I hate that when things DO settle down, they start going bad again.

I also hate that she's probably never had a comfortable day in her life. It's very likely she's always had pain somewhere at all times, (most likely in her chest) and we wonder why she gets crabby and aggressive, and yet it's not acceptable to be this way. She's probably never known what it's like to be pain-free.

Why can't she have something that will eventually go away, or that she'll outgrow?

I'm sorry, I'm having a bit of a pity party for my kid tonight. After watching Kennedy's day, and then getting this news, I'm just feeling like some of our kids need to catch a break already!

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