We are home. Ahhh, I love my house. I love our routine that has become so much a part of our lives. I love our friends who came and brought us dinner and were okay with just having a carpet picnic...Poage, you are wonderful friends. I love getting both of my kids bathed and in bed and they are both asleep...and I think they know that life is back to how it should be.
Well, she had a febrile seizure...pretty much a seizure caused by fever. Now, what caused the fever to spike? A UTI (Urinary Tract Infection) was the infection, but we later learned today that they had the bacteria wrong. There are 3-4 usual bacteria that cause a UTI...so that's how they were treating the infection. Today they found out that it was a different bacteria (Enterococccus Faecalis) so we had to change her antibiotics.
So, what does all of this mean going forward?
Ella will be on seizure meds for at least the next 2 years (it's a minimum, some doctors say 5 years). She will take Trileptal 3X a day, every day, for 2 years...then we can recheck where we stand. (also, no driving for at least 6 months, thanks Collin for reminding me not to let her behind the wheel) Amoxicillin for the next 10 days to get the UTI under control. They also want her on Miralax (a laxative) to make sure that she doesn't get any bacteria anywhere it's common. We have also been given a Diastat so that if she ever has a seizure for longer than 3 mins or more than 2 in a 24 hour period, we can give her a shot. It's like an epi pen for seizures, I guess.
She is still really weak and very floppy. If you know E then you would think that was our normal, but she's even more floppy and really weak and tired, so we are just letting her adjust.
I'm guessing that this means that "camp" is out for this session, but I will talk to them tomorrow. I'm not sure when we will start back up with all of her other therapies, we will take it one day at a time.
Thanks again for all of your prayers. Thank you for loving our family, and mainly our daughter so much. Thank you for the visits at the hospital, the baskets of food, the meals, the hugs, the texts and facebook/blog messages. Thank you for having the faith in our Lord, that you asked for Him to heal Ella, and He did. Either way, please make sure and tell Him "thank you". We have thanked Him a lot today.
(These are all the pictures I took before my camera died...this was the second day in the PICU)