It is agreed that this is most likely disease progression and not because of a virus. We are hopeful that adding an additional seizure medication will help keep them under control. I am skeptical and believe I have good reason to be. My fear is that we will go home again, have a decent week and then will be back here again with the medications not working. Unfortunately these medications are not ones that are able to be switched quickly. It's a slow increase, and slow decrease with any modifications to decrease the chances of side effects.
The crazy thing is how well this girl recovers in between. Not complaining but still, it is strange. She seems completely herself. Smiling and limited little seizures when all of the sudden the big ones come out of nowhere and go south quick. Talk about keeping us on our toes. I completely understand that Layla has a very rare disorder that not a lot of the specialists know about but boy would I like someone around here who can discuss more about the disease. It often seems that the hospital's goal is to make her stable and once they've done that, they figure the job is done.
I have to give major props to the emergency trauma team at the Abbotsford hospital because they have actually done all the hard work of getting her out of status epilepticus. I just like saying that word. Though I don't like when it happens. (That's when she continues to have back to back seizures without regaining consciousness in between.) When they had to intubate and give IOs and add a central line, we were very appreciative to them for explaining what was happening, and why they needed to do it. They kept checking if we were ok, or needed to step out of the room for the tough stuff. We understand that Layla is a bit complex for the paediatric floor to often deal with her but it's nice to know that we have in our own community some great medical help in an emergency.
Our current neurology team has unfortunately not been overly helpful. They are not keeping us well informed and I'm not sure what is happening each day. On the weekend we made a bunch of plans with the neurologist and we were very happy with her ideas and hypothesis. Only to have a new team during the week who decided that none of these things needed to be done. We voiced our concerns and were able to get Canuck Place doctors to back us up and be another voice but it doesn't change the head neurologist on duty for the rest of the week. Yesterday morning I assumed we were going home, only to be told the new goal was to get her an MRI before leaving the hospital. I was actually very excited about this because we are still more than 9 months away on the waitlist. By last night they said that now wasn't going to happen and we'll have to wait for a booking at some point in the future. Then late last night she was referred for a 24 hour EEG this morning if the technicians had time. Which we just had done a month ago so I'm not really confident that it will be that helpful. Now she is hooked up for that but the technologist said there was a note saying she was going home. They were confused as well. Glad I'm not alone. Lack of sleep and a mushy brain are partly to blame in my fuzziness. I just don't have the energy to fight hard right now. I do want to go home. Especially if I am not confident in the supports we are receiving here. The latest news I just received is that we will complete this 24 hour EEG and tomorrow once they take all of the leads off her sweet little head, they will see if there are any cancellations for an MRI and she will take that spot. If not, then we are looking at the holiday weekend and will be discharged.
Close friend's started a Go Fund Me account to help us with parking, missed work, accommodations, food etc and we are overwhelmed with people's generosity. At least one area of stress is able to stay down. Thank you to everyone who has given, and sent good thoughts and prayers our way. We are eternally grateful.
We really hope that she will experience a long chunk without these episodes and we will be able to manage more at home, on our own. But as I type this, my gut instinct is that we will likely see more, just not sure when. For now we will enjoy every day and moment of joy which still finds it's way in and amongst this dramatic season we didn't see coming.
If this new combination of medications works we will go forward with Layla's make a wish trip in just over two weeks time. Nerves surround it but feel like if any time we need it, it is now. So keep your fingers crossed that goes off without a hitch!
Don't know what we would do without this incredible man.
