We left the house bright and early this morning to head to Akron for follow ups with the kids doctors. The first appointment, with the neurologist, was nice and early at 8:30. It was delight to get everyone out the door before 7 am to then encounter the end of rush hour once hitting Akron. Thank goodness the office was easy to find!
The kids behaved pretty in the neurology office. No melt downs, some antsyness, but we were in there for almost 2 hours. I think we were ALL starting to get antsy! Our appointment was with a nurse practitioner who was a very nice lady. She was great with the kids and explained stuff really well. I liked how she asked Emma and Taylor themselves how they were feeling. Sometimes it is easier to talk over 3 and 5 year olds than to them. Some days easier on the blood pressure too, but she was great.
They have decided to start weaning the kids off of their seizure medicine in hopes it lessens the side effects. Both kids are on Keppra and Vitamin B-6. While Keppra is a “clean” drug, meaning it does not work kidneys and other organs harder, it does not improve ones personality by any means! Emma’s dose is being reduced at night to hopefully help her insomnia. The thinking is by lessening the insomnia it will help improve her mood for the better by being more well rested, as well as less medicine. Taylor’s is being reduced in the morning in hopes it makes his irritability more tolerable. He has become very quick to throw a punch or kick when angered. That is not my sweet little T. I’m really hoping this works. If not they can keep lowering their doses little by little.
With lowering the doses comes some risk of seizures. Both kids were prescribed what is the equivalent to an epi-pen for seizures. They only need a dose if the seizure lasts longer than 5 minutes. I’m having a hard time believing I can let my kid seize for 5 minutes while remaining calm and not doing anything. It would be nice to not ever have to witness that.
The nurse practitioner mentioned that she couldn’t imagine seeing our medical bills. Then Tom told her we didn’t have insurance and were trying not to imagine how bad they were before they got here. She hunted down a social worker for us who is checking to see if we qualify for a few things, fingers crossed.
There were 2 hours to kill in between appointments. We headed to a Bob Evans to grab some brunch. It was good, the kids were iffy at best. They had been up since 6 and it was starting to show. We all survived and headed back to the hospital to meet with the infectious disease doctor. Since we arrived about 45 minutes early the kids and I grabbed a quick snooze in the car while Tom entertained himself playing solitaire on my iPad.
I was really worried after the nurse came to take vitals. Emma had a melt down on her. The worst part of these meltdowns are they scare Taylor. After the nurse left she came back around and was great with the doctor. It was the first time he had ever actually had her talk to him and they spent 6 days together in the hospital. I think he was pretty happy when he left.
We had the option of drawing blood on the kids again to be 100%, with out a doubt, positive to what the kids had. After talking with their doctor we did not do it. It wasn’t going to change the course of treatment. We were all worried it was going to send both kids in to a tizzy. Part of me wishes we had, but I think it was for the better that we didn’t.
After meeting with infectious disease, we talked to a financial counselor. For as amazing as the doctors and nurses are at Akron Children’s, they could work with these people. Teach them some social skills. That’s all I’m going to say about that.
Finally we were all done with appointments for the day. Heading home we had to stop by the local pharmacy to refill prescriptions. The boys had both fallen asleep by this point in time. There is a nice lake we drive by on the way home. Don’t fear, we got to check it out very well because my car decided to die. Tom, Emma and I sat by the lake and waited for my dad to bring some oil and save us. The good news is, while waiting I happened to snap some cute pictures of Emma.
Once we came home we were greeted by our first hospital bill. My car has an appointment first thing in the morning at the shop. I am drinking an Angry Orchard because thank God it’s 5 o’clock here!
A medical fund has been set up to help defray the kids medical expenses. It can be found at http://www.youcaring.com/medical-fundraiser/mcdonnell-family-medical-expense-fund/209427
To read about their journey with Lacrosse Encephalitis, it begins here: https://ofkidsandcows.wordpress.com/2014/07/19/the-last-36-hours/
Remember, I got all fancy and have a Facebook page these days, Check. It. Out.