Aaron and I were fortunate enough to sneak away for a spa afternoon. Before and after our massages we were able to make use of a relaxing area with different pools, showers, saunas and snacks. It was so peaceful. Obviously, the actual massage was my favourite part. Did not want that to end.
By day 4 we realized that she hadn't had a bowel movement since we arrived. This was the start of things going slightly downhill. Once that was dealt with, we all assumed things would go uphill. Unfortunately this was not the case. Every time Layla was overstimulated she would throw up, have a seizure, or both together. It was really disheartening. The extra events that brought so much joy were turning out to send her over the edge. One event we were really looking forward to was "movies under the stars". They put Coco on a big screen one evening and everyone sat out on the lawn to watch it. She laughed her way through the previews and then as soon as it started she was overwhelmed, had a seizure and puked everywhere. The staff ran to grab towels while our nurse suctioned her and then we had to make our way back to the room to clean her up and calm her down. One of the employees snuck off during this and grabbed a copy of the movie for us to borrow and watch in our room. (didn't get a chance to, but the sentiment still meant a lot). We tried taking her to a luau the next night, after a quiet day. She laughed to begin with and then laughter turned into seizing. It was clear she just couldn't handle much.
The last three days we kept her in her room for 90% of the day. Having a nurse travel with was so much more important than we realized. With her there we still all got opportunities to enjoy the location and resort even with Layla not doing well. The evenings were all cut short because of seizing or throwing up and we ended up back in the room. Once there, if we got her to sleep she was able to recover and be back to herself for some good chunks of time. Extra thankful for the room upgrade for the time we spent there.
Friday morning, the travel day back home, we were all packed up and ready for the bell boy to bring our bags down to the lobby. As he knocked on the door she started throwing up, we started suctioning and had to grab a new outfit for the plane ride. The 3 of us adults were all on edge. Down in the lobby, as we were checking out, I looked over to find her seizing. Bringing her to the side for some privacy she seized again. I got Aaron to call Canuck Place and get their advice. She seized for the 3rd time. I gave her rescue med. They said we would not be approved for travel and that we needed to go to the hospital. By the time we arrived at the hospital she had relaxed and been seizure free for an hour or so. The doctor saw us fast but we had already missed our flight. He looked at us knowing he didn't have a history with her and basically just trusted our opinions asking what we wanted to do. (P.S. I think we deserve to become honorary doctors). After giving her some seizure and nausea medication we decided to head to the airport and were switched onto the overnight flight home.. 8 hours later. The check in counters were closed so we lugged all of our 7 bags to the only air conditioning pre-security which was by the baggage carousel. 5 hours pre flight she had another seizure. Normally we would only give her rescue medication if she had a longer lasting seizure or a few in a row but we just needed to nip these in the butt so we gave it right away. I didn't want to call back her doctors because I knew they would just say to get back to the hospital. The nurse said in her professional opinion she was unable to advise us to get on that plane. I felt sick. Bouncing pros and cons and worst case scenarios off each other we came up with what seemed like the best plan. We agreed that if she seized once more we would call an ambulance. During the week we had given her gravol twice and both times she had fallen into a deep sleep fairly quickly. The executive decision was to give her some more right before the flight and just pray she would sleep most of the plane ride back. The nurse, Aaron and myself didn't sleep a wink because we were so worried of what could happen on board. Between a solid rotation of seizure meds, advil, tylenol, melatonin and anti nausea meds she slept the ENTIRE way! My heart jumped when the wheels touched the ground at YVR. At least now, if anything happened we were with doctors we know and near home. A few hours later after going through customs, getting our van from the park and ride then driving home we arrived through our doors at about 10am. By 1030am, she started puking again, and within a few hours the puking turned to seizures. At 4pm we couldn't control them at home anymore, called an ambulance and we on our way back to the hospital. They got an IV in faster than normal and she was on an anti seizure medicine drip which got her out of it relatively quickly. We begged them to not transfer us to BC children's because it's just too far from home and we hadn't even been home. Thankfully they were ok with it as long as one of us stayed with her and just consulted with neurology over the phone while treating her locally.
4th Hospital Admission in 8 weeks.
I know this all sounds incredibly overwhelming.. and it is. I feel like we're just going on fumes, surviving each day and waiting for the next emergency. But there are some positives. I am amazed at how well my gut served us. The timing was so good, things could have gone a lot worse. We only spent a couple hours at the hospital in Honolulu. If we had gone back after the seizure at the airport we would've had to stay another few days to week.. in a hospital where we are foreign and unknown. But instead we made it safely to our home and to a hospital that we have grown to know quite well the past couple months. Silver linings are somewhere.
Now, Layla's been home from this past hospital stay over a week. Running through all of the events the past while it seems obvious that she is unable to handle overstimulation anymore. Even a trip to Costco is seeming to be too much for her. It's difficult to accept because we have been really thankful the past couple years that she has been flexible with being social and taken everywhere we would like to go. She was our party girl. Coming alive in the evening. Times are changing and we will need to keep her home more. I don't know if preschool will be in the cards anymore this fall. We were hoping to get her out and about with other children but not sure if that will be possible. If we're lucky, this is a short faze but my instinct is saying that it will be our new normal. Yesterday and today we are back on edge with a few seizures and her being "off". Staying in, resting helps. I'm also so thankful that through everything this girl has gone through, she always finds ways to smile. It would be so much more difficult if she was unhappy for the in between time.
Even with the way things ended up I am so happy we got to go on this trip. We were very fortunate to be given the opportunity and some good memories were made. It still felt like a bit of a break from reality and the fresh tropical air did so much for my soul. It's lot better than hospital air, that's forsure. Here's some shots of our princess in paradise.
