Well the good news is Layla has been out of the hospital for an admission for almosstt 2 months. For that I am thankful. I’ve been letting the time pass to see what would come. Would she get better, worse, stay the same? What would become our new normal? Unfortunately, our new normal includes daily seizures.
From February until April she would have one crazy day full of seizures, go into the hospital, get the interventions needed to bring her out of it, rest for a day and then recover to herself for a week or two before the next one would come. Since May, they have been less aggressive but predictable and consistent. And to be honest it seems even worse. We don’t get a break. Her quality of life is going downhill. Even these consistent ones used to last a quick 30 seconds at a time. She’d be tired and sleep afterwards and then back to herself. In the past few weeks they've been lasting between 15 to 45 minutes at a time. Then they are just wiping her out, energy wise. Hours out of the morning and evening she is not able to give us what she used to be able to. All therapies have been suspended for the time being. No more physio, OT, speech or vision therapies. (Of course, keeping her favourite-music therapy) We have cut back on our outings and visits because it’s just not worth it. This past spring we were planning on making a cross country visit to Ontario to see family and friends but she’s not stable enough. We used to take pride in the fact that we would adventure out and take Layla all over the place. It’s hard to feel like that is not practical or even safe anymore. Home is where she needs to be.
A side effect of one of her seizure meds is increase secretions. This has made it difficult for Layla to be upright in her chair because quickly the secretions go into her chest and sit there until we are able to do some chest physio to try and break it apart for her to cough it out. Laying on her side on the couch helps her drool them out and is the most common position lately. This was one of the many reasons her feeding tube was switched from being a G tube (which goes directly into her stomach) to a GJ tube at the end of May. This tube now has two ports. One goes into her stomach and the other one bypasses the stomach and goes into the jejunal portion of the small intestine. Feeding into her intestines helps dramatically with reflux. We are able to drain her G port (stomach) into a bile bag during the day and night, which is helping with increased secretions.
Recently the Abbotsford hospital called me to set up a meeting with the local professionals in Layla’s life to come up with a plan for when Layla is brought into emerge. It brought up some hard conversations but overall will be very beneficial to us all. The paediatric floor is training to give her seizure rescue med. This means we shouldn’t be left with the responsibility of being directly by her side 24/7 while there. Together with a few different doctors, we are coming up with an algorithm for how to treat Layla when she shows up at the hospital seizing as well as if they transfer us to BC Children’s. Attached to her name and care card will be this algorithm so they will not follow normal protocol and testings. Our priority is mainly comfort care. We do not want Layla to go through what she did back in March with multiple IO’s, central lines, intubation. It was traumatic on everyone involved and does not line up with our values for our sweet girl. Hopefully with this information in the hospital’s system we can keep things as pain-free as possible.
Next Tuesday we will meet the epilepsy neurologist. We were supposed to see her last Tuesday but the appointment was pushed. I have two nurses and a Canuck Place doctor coming with for support to this appointment. They have all been around to witness what has been going on the past 6 months for Layla. Hopefully this appointment with give us some guidance about where to go from here and what changes can be done to give our girl the best quality of life. We have to decide how much medication is worth it. Finding the line between how many seizures we will just have to be okay with while keeping her not sedated is the main goal.
Then at the end of this month we will meet with the surgeon to book Layla’s hip surgery. We’ve been putting it off a long time and I kept thinking that we needed to see some stability with the seizures before considering putting her under but with the right hip being 100% dislocated it needs to be fixed. Her doctor has said that a goal of being seizure free is likely unattainable at this point so we just need to make her as comfortable as possible.
Mentally it’s been a bit of a struggle for me. I’m finding it very difficult to focus and look much further than a few weeks in the future. That mentality isn’t anything super new in my life but it does feel like my brain has been especially foggy lately. We’re trying to plan for preschool this fall. Layla's turning FOUR!? Which should be a very exciting time. I just changed her from the morning to the afternoon class because the mornings have been a fairly consistent write off. But now if she has the surgery, that will be a pretty lengthly recovery time. Add in the seizures and I’m really not sure if it’s worth it. A nurse will attend with her if we decide it’s the right direction to go. That brings a bit of peace of mind. But who knows. It'll have to be a last minute call.
That’s what’s going on in my world with Layla. A lot of uncertainty but as always, a lot of love.
