I'm breaking from our usual "what's Frances done this week" post talk about something that has irked me all week. Stick with me- I may get a little long-winded. Poor Frances has been through the ringer over the past few months with illnesses, doctor appointments, tests, etc. Just since 2012 started, Frances has done GI, ER, ophthalmology, ENT, cardiology, neurosurgery, x-rays, ultrasounds, ct scan, and of course multiple trips to the pediatrician. We are blessed in that we are not dealing with anything life-threatening, but the poor girl needs a break!
This past Monday Frances had a ct scan with contrast dye done, and she had to go under anesthesia for it. The results came back totally fine, so no worries there! I have to say that pretty much all of her medical visits have all been positive experiences so far, but we had a little incident at the hospital Monday that has really taught me the importance of asking questions and being aware of what's going on in the medical setting. To start off with, one of the nurses asking us 500 questions ended by sticking her head back in the door to ask, "Now does she always hang her tongue out like that?" Really????? Maybe the question was important to know about her breathing but surely there's another way to ask! I hear comments all the time from people who likely know nothing about Down syndrome and likely have good intentions, but people just don't think before they speak. I'm usually not bothered by any of it, but coming from a nurse, it just rubbed me the wrong way.
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| All smiles before they started messing with me! |
Frances came back from anesthesia recovery mad as a hornet- screaming like most of you have never seen her do before. The sweet nurses made sure to tell us "oh, she just started crying when we came down the hallway." Yeah right. We later hear from the anesthesiologist that she had put up a fight the whole time except when she was asleep. No big deal, but I was irritated that the nurses had told us otherwise. It was really hard to get her calmed down and she was refusing to drink anything. I thought maybe her throat bothered her, but the nurse said they didn't use a breathing tube, just gas. Incorrect. Then I kept thinking Frances just didn't look right. She was puffy, splotchy, had some petechiae on her cheeks....Mama's know when things aren't right. The nurse kept telling me "oh its just because she got so mad." I disagreed. Then about an hour later, Frances turned bright red from the neck up. They did, at least, check on that. After we were home she spiked a fever over 103. It. Was. A. Rotten. Day. Thank goodness for our sweet pediatrician who constantly checks on us and really listens to me, because I felt like no one else did that day.
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| Does she look right to you? |
So she likely had some sort of reaction to the combination of medications (anesthesia, contrast dye, etc.). She also has had an off and on rash for a few weeks so she is just over it all right now! Frances is scheduled for her next set of tubes in a few weeks, and possibly getting tonsils out too. Next time will be better! I'm writing about this now for a few reasons. One being I have been frustrated all week and sharing it is helpful. Also, just a reminder - ask lots of questions. Ask them over and over, even if it seems like you are annoying, and if you think something isn't right, don't let someone convince you otherwise. Trust your gut....then honestly fill out the satisfaction survey they send you in the mail. As I said before, we have really had nothing but positive experiences and I'm so thankful we live where we have such incredible medical facilities!
I'll end with a cute picture from our exhausting but fun weekend. We hit the Autism Walk, Funky Fish Fry, UAB baseball game, and a birthday party all on Saturday!
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| Its been a long week but I'm all good now! |
