Maddy had an EEG yesterday, and at that point she had no seizure activity. Thanks for praying about that. We'll continue with the Keppra, probably until she's 2 and then she'll have more testing and she how she does without Keppra. We're so thankful that the seizures have stopped!
One other side note about the whole swallow study thing, if you're interested. The speech therapist thinks it is possible that Maddy has a submucous cleft palate. This can cause swallowing issues, making her an inefficient little eater! Anyway, it may just be another piece of the DiGeorge Syndrome puzzle. Interesting, but not a lot that's done with that. Pam
Hi, Loyal Maddy Fans!
We got back a little bit ago from the swallow study, a very neat test in which Madeline got to eat different consistencies of formula, etc, mixed with barium, with different bottle nipples, all the while being x-rayed to see if she was aspirating. (By the way, I need a test like that...anything with food!).
I cannot tell you how grateful I am that Dr. Moser ordered this study. Maddy is aspirating just about everything she takes in, no matter the consistency or flow. Particularly concerning is that she aspirates quite a bit before she "tells" us by coughing. Previous to the RSV, she was coughing about half way through her bottle, every time, meaning that she probably had aspirated a few times before the cough even.
Aspirating (just in case you're not up on all your swallow issues) means that she is the food is going into her lungs rather than her stomach. You know how you feel when you laugh with a mouthful of water and it goes down the wrong pipe? That's probably how she's felt with almost every feeding. This could be why she's needed to be on oxygen for so long.
So I'm waiting on the doctor to talk over options. I've had several people tell me not to fight a g tube (feeding tube directly to the stomach), and when I look at the options, I really feel comfortable with the g tube. For now, she has an ng tube (nasogastric--meaning going through the nose to the stomach), which she's had since Sunday. Since she'll probably need to be on a tube for a while, it's a lot simpler not to have a temporary one down her nose that we have to change and have taped to her, etc.
Please pray that the right decisions will be made for her care. I've been so impressed with every nurse and all doctors but one since we've been here. They love to socialize with Miss Maddy and she really enjoys the attention! We'll probably be in here a while longer than anticipated, so you might want to pray for Dearest Hubby who is taking care of the girls, including getting Carli ready for school every day (that would be interesting to see). I think they may be coming down tonight, which makes me happy, especially since Carli told me the other night that she missed being a family.
Here's a HUGE shoutout to Lori and Kiersten. I met them when their (adorable) little boys (both of whom had a crush on Carli, I believe) were in preschool with Carli. They came yesterday bearing gifts and spent three hours here, just for girl time. What awesome friends! They brought me a tulip, four magazines, fruit, vitamin water, a book for Maddy and CAKE! The cake was from a Kokomo baker, and it was heavenly to say the least. There were three flavors: Lemon, Tahitian Vanilla and Chocolate. We split each piece three ways and polished it all off. YUM-O! I laughed myself silly a few times, and all around felt so much better. I even got past my mental block then and finished a lot of my schoolwork.
I have some more problems to do before tonight's deadline, which isn't too bad considering that I've been either at the doctor's office, Maddy's therapy or here in the hospital ever since this week's class started (last Thursday). I'm so thankful that it's more calm and laid back here on the weekends or I never would have gotten as far as I have. So far the weekdays have been so hectic I've hardly had time to breath (or get out of my sleep clothes), let alone work on homework. It's so hard to concentrate even when there's nothing going on at the time. So to make a long story short, I HAVE to get off of here and attack those problems or they won't be done on time. But I did think it was important for me to update every one, so don't judge me too much for typing such a long email when I should be studying! :)
Thanks for praying and keep it up!