This week my Word of the Week is:
Two weeks ago in my word of the week blog post, Unknown I said I was being silly for worrying about Ellie's MRI scan. The scan was just routine before she got fitted for a hearing aid and it wasn't expected to show much. I was wrong. We thought on Wednesday it was a quick chat with the consultant at hospital and then Ellie would be getting fitted for her hearing aid. That didn't happen, there wasn't much mention of the hearing aid. It turns out the doctor wanted to give us the results of her MRI scan.
The MRI shows that Ellie has had some small bleeds on her brain. (They're old one's). The doctor couldn't tell us when from but as she hasn't suffered any major head trauma it's hard to say when. The doctor asked if she had ever banged her head badly and we couldn't think of one instance which would have caused something like that. Over the years she has bumped her head but nothing that has even caused a bump, lump or bruise. Things like bumping heads with her sister, crawling into things or heading a football. We are being sent to a neurosurgeon to shed some light on it.
I asked if the bleeds could have had anything to do with her heart (She had open heart surgery to fix a hole in her heart when she was 18 months old and now has leaky valves.) He didn't know anything about her heart issues despite having her notes in front of him in paper form and on the computer. He said it could be but that is up to the neurosurgeon to decide.
We haven't had the best luck with the doctors in Scunthorpe and the doctor that we saw wasn't the greatest, he was another stand in, was about 80 years old and just mumbled. He was there to tell us facts, using words we didn't understand and nothing else. He was reluctant to answer any of our questions as he wasn't an expert on the brain which now I've thought about it makes sense he didn't want to say anything wrong, worry us or provide us with wrong information.
The nurse again was amazing and explained everything the best she could. She did tell us not to worry about the word neurosurgeon because that's just what the brain specialist is called, it doesn't mean Ellie needs more surgery or that it is anything serious. She also made sure that as well as marking the neurosurgeon appointment as urgent the hearing aid appointment is too just to take some of the stress off us.
I am really kicking myself at the moment. For years just after Ellie had her heart surgery the hearing doctors wanted her to have a MRI just to aid their research if I had let them do it then we wouldn't be sat here now stressing. I don't think it would have changed anything but it's still frustrating. Even after the MRI scan we are still unsure what has caused Ellie's hearing loss, they are still putting it down to bad luck and bad genes.
Now we wait for an appointment with the brain person and the appointment to get her hearing aid fitted. I'm not going to lie and say I'm OK but I am feeling better and more positive than I was on Wednesday. I think it's the worst hospital appointment we've ever had and that includes the one's where we were told that my girls had heart defects and needed surgery but at least then there was a plan and we knew what we were dealing with, at the moment we are still in the dark. Ellie is fine though, she is fit and well and again she is taking it all in her stride.
I hope you've all had a good week?
