Thanks for sharing her pages! We're slowly getting closer to her seizure dog, which we need very much!! www.gofundme.com/money4mickie
Get ready for a long one! Once Mommy vents, it's hard to stop her!!
Well, we took Mickie to Gatlinburg to the Wilderness WaterPark hotel for her birthday. When we arrived and went to pay our balance, they informed us that it had already been taken care of!! Considering the fact that not many people knew where we were taking her, we were so shocked at the amazingly wonderful gesture! It takes us a lot to save what money we can for her birthday money! So whoever you are, thank you!! So we got there on Friday early afternoon and had a GREAT day there! It's an amazing hotel and we had a blast, crashing by 10:30 that night! The next morning, Mickie woke up a little disoriented, so we knew then that she'd probably had a seizure the night before. We let her work it out, and we went to the arcade and gift shops and let her feel a little better. However by 1:30, we noticed that she was staggering when she walked and was "holding" the wall when she walked. Her words were a little slurred as well, so we didn't want her going into the pool anymore. She ended up sleeping at 3pm and did not wake up until 10:30 that night. As soon as she woke up, she began vomiting. She couldn't stand without help, she had to crawl instead of walk, and she was having double vision. At that point, there was no way we could stay there any longer. We didn't know about the hospitals in Knoxville, so we packed our stuff quickly, checked out, and sped home to Chattanooga, making it home by 2am. When we arrived at home, Mickie said she'd rather take a Meclizine than go to the ER, so we tried that option first. The side effects were "normal" for the new medicine she was on, but not to this extent. She slept longer again, and woke up around 10:45, no better. Off to the ER we went....and we got the same doc that treated her for the croup last month! He even remembered her! lol. Sure enough, she was very ataxic and couldn't even stand up to let them take her blood pressure. She was barely able to touch her finger to her nose or follow his finger with her eyes. You would seriously think she was on drugs, and I'm sure it scared her, because it scared the crap out of me! So he called her neurologist, and Mickie always stumps everyone, but he told her to stop the drugs, So we're off the new drug (Zonegran) and slowly working on the side effects getting out of her body. Sent her home to sleep again.
While I had a few minutes, I attempted to call the hotel to see if they could be compassionate enough to understand the situation that this was her birthday trip. You would think that a hotel with a major reputation would have sympathy for a child on her birthday trip that had to cut it short because she had to have seizures and go to the hospital....you know, give us the night that we missed out on, let her have her arcade card that we put money on just hours before......but they refuse to address our question, won't acknowledge us at all......so that's okay, I'll remember that. My kid's birthday trip got ruined because of something that she couldn't prevent. Okay, vented on that part......
So......from 2am yesterday when we got back home until 2pm today, she'd only been awake for maybe 6 hours during that entire time. I really got into it with my management company today (they handle hiring/firing, payroll, billing, etc). I got to work and told them that I needed to get an MA to come in and cover for me because of my kid and I had to go back home. Keep in mind, I've been with my doc for almost six years, and I RARELY ever call out. I mean, RARELY. But today, with the way she was acting for the past 2 days, I was putting my kid above my job. Well, wouldn't you know it, the guy at the company and I got into it because he "didn't care" what I wanted, they didn't have anyone they could send over because three people had already called out today. Well, the frustration took over and I politely told him that I was going to hang up on him before I said something rude. And I hung up on him. Vented again.
Mickie ended having to stay with me at work for a majority of the day. See, I have my loves...my family and my job. And my co-worker and I are like best friends, so if I take off, I feel extremely guilty because I feel like it puts more work on her. At the same time, I hate having Mickie here at work with me when she's sick, because she deserves to be in her own bed. While we had her at work, her neurologist (other boss) saw her and we decided to stop the Zonegran to get her side effects to stop. Hopefully once she's had the med out of her system for 3-4 days, the balance will get better, the vision problems will get better and the seizures.....well, they'll get worse again lol. But we will start a new med on Friday, called Potiga, very new off the FDA shelf, that she'll start out with 50mg three times a day, and work her way up to 200mg three times a day. This is the fourth seizure medication she's been on since she was diagnosed 11 months ago, so we're running out of medications specifically aimed at her kind of epilepsy.
Needless to say, the doc is frustrated, because she's a "problem patient". The downside is if that this new medication does not work, we will have to discuss a VNS, which is called a Vagus Nerve Stimulator, implanted into her chest, and the wire will run up her neck and into her brain sending pulses to help control the seizures. This is not something I want to do, because even though I have patients with a VNS, it can be frustrating watching them go through it, getting the settings right, swiping the magnet when she has a seizure, etc. It's a lot of take in.
So that's our life so far. We've raised almost $800 towards her seizure dog, and it's becoming important more now than ever for her to have this dog and we really need the funds to help get this dog! Please help us out by sharing her pages, you can even print a page with the information that allows the person to scan the code and access it with their phone!! If you have any questions, please let us know!! Thanks for keeping up with our "soap opera lives" and we'll keep you updated as to how Mickie is doing!