Well, I know it has been an incredibly long time since I have added anything to this blog. Things got busy! But for a while, things were really good and there wasn't a lot to talk about. For a while, I felt like I was just adding things for the sake of adding things and it was more of a hassle than the therapy it originally started out as. But things are no longer good. Things are actually really, really bad. I'll try to go back and update the blog but I will mainly focus on updating going forward.
Jayen's seizures came back in August of 2018. They were subtle at first but with every head drop the intensity and frequency increased. More fights with the hospital ensued and we eventually received the confirmation that Jayen was, in fact having seizures. We tried to manage them with medications but continued to fail our way through the list. Finally, in July of 2019 we conceded to another surgery and added a Vagal Nerve Stimulator (VNS) to his regimen. This device, similar to size and function of a pacemaker, is supposed to send electrical impulses to his brain to hopefully stop the electrical impulses of a seizure. Well, 7 months later I can't report any improvement and actually can only report things are progressively getting worse.
When we moved back to Nebraska this year we had an appointment set up to meet with Dr. Proleta Datta at UNMC Bellevue office. Dr. Datta was very nice but quickly told us she is not a pediatric doctor, nor an epileptologist. She would be willing to manage his care but thought his case was beyond her practice. She suggested we try to see Dr. Hannah Klein at Boys Town as she is the ONLY pediatric epileptologist in the entire state. I tried making an appointment with her office but they wouldn't let me schedule anything until Datta's office sent over his records. I battled with them for weeks to get the records sent then finally filled out the paperwork for Phoenix to send them directly to her. Things were getting progressively worse for Jayen so I reached out to his pediatrician who called Klein's office to ask for any assistance getting him in sooner and again was told there was nothing they could do. So, me being me, decided to share my worries and problems on their social media advertisements that continually came across my feeds. The very next day the director of neurology called to ensure me they were doing everything they could, but still had nothing sooner. I just explained how worried I was with the situation we were in. We can't see the neurologist who previously managed his care because she is in Phoenix, Datta didn't feel comfortable doing anything and frankly I didn't feel comfortable with her (more of that later), and the only advice Klein's office would give me was that if things got worse to take him to the emergency room. So I, not so politely, informed the director that those options were not appropriate. If I took him to the emergency room, a doctor who has never seen him before and wouldn't have access to his records would have to make a recommendation based on his minimal expertise in seizures. I didn't understand why her office thought it was more appropriate for an ER doctor to lay eyes on my son and make a recommendation rather than Dr. Klein use her medical expertise to make a recommendation even though she has never laid eyes on him. A week later I received a call stating they could get us in on February 7th rather than the 24th.
Today we finally saw Dr. Klein. Well, what a day it was. The appointment was scheduled for 11AM. We arrived at 10:15 since we knew it was our first appointment and just wanted to make sure to give Dr. Klein whatever time she needed. Jayen was anxious to be at the doctor's office so it was a little harder to contain him in the waiting room. At 11:45 a nurse came out to tell us the Dr. Klein was running incredibly behind and had an emergency she had to take care of. They wanted to know if we would go have lunch and come back at 1. We were not happy but agreed. We ran to lunch and were back by 12:35. Around 1 his vitals were taken and we were placed in an exam room. It took another 45 minutes for Dr. Klein to come in. But I was even more annoyed when she said she didn't have his records. WTF? Your office wouldn't even let me schedule any thing until you had them! We verbally went over his history.
I was impressed that she took the time to talk though everything but I was extremely disappointed that she didn't have a lot of options for us. I felt like she basically told us to live with the way things are now or to try another brain surgery, this time doing a corpus callosotomy. I am not ok with either of those options. She was able to help us getting a new rescue medication as the oral wafers are doing nothing to stop his seizures and diastat is not a great option for school.
Left with so many unknows for his life and future and only crappy options. Debating whether or not to get a second opinion elsewhere.
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