We had Owen admitted yesterday morning - at 7:30 am - for a 24 hour EEG/video monitoring. His seizures continued to worsen over the weekend, with his/our sleep diminishing to 2-3 hours a night.
I really thought that the activity we were seeing was that of myoclonic seizures, given their manifestation, but the interpretation of the 120+ seizures over the course of 21 hours revealed that the infantile spasms are back. Ugh.
Owen and I stayed overnight at Swedish Hospital, Kelsey stayed in the city with Kevin and Kathryn. Janet came for the first day, Leslie joined us for the second. Only one parent is typically allowed in the rooms on pediatric units, something that I'll never understand. I would trade sharing a single, worn out, sunken-in-the-middle cot with my husband for the support and comfort that having him close provides. Owen and I slept for a total of 45 minutes the entire night. Seizures and a heightened awareness of unfamiliar surroundings kept him up most of the night.
Owen and I have slept a total of about 21 hours in the last seven days - Kelsey only a handful of hours more. I do my best to try to buffer Kelsey so that he can get up at 5:00 am each morning to get into GFC somewhat refreshed. Lately, however, Owen has been most comfortable sleeping in bed with us - Kelsey's sleep then directly affected by the bouts of seizures. Neither one of us minds, however, as we are warmed by the fact that Owen knows we are there and is comforted by being with us. He truly relaxes and feels safe - you can sense it in his body language and the fact that he much more readily falls asleep, despite the seizures.
We returned home this afternoon, weighted down with the recurring spasms information. I find that I am not surprised, but certainly saddened. Owen has endured over 80 ACTH injections, disruption to his overall sense of well-being, a hindering of any possible development since last October (six out his ten months of life) and six figure hits to his lifetime health insurance maximum because of these seizures and associated treatments.
We are moving forward with Vigabatrin - only available in Canada/Mexico and not FDA approved in the States. This is one of a handful of reasons we chose Dr. Sotero as he is willing to prescribe this drug which is the treatment of choice - before ACTH - in Canada, Mexico and Europe. In the next few weeks, we will also be moving forward with the ketogenic diet which we are very excited and hopeful about. There have been recent articles in the Seattle Times and New York Times outlining the benefits of this diet. We will try to work through Children's Hospital for this as there are two nutritionists on staff there who are skilled with this highly precise diet. There are Bibilical references to the diet and it's use became highly touted in the early 1900s on the East Coast, falling out of favor when certain pharmaceuticals like phenobarbital, a less effective treatment, came on the scene in the 1940s.
We will continue to keep you all in the loop via the blog and, in the meantime, appreciate any toe and/or finger crossing, sacrificing of chickens, saying of prayers, giving of blessings...
On a totally unrelated note, my cousin, Jesse, was out here last week from Iowa City to attend the Sasquatch Music Festival with my brother over the holiday weekend. Jesse, we loved having you here for a day before you left for The Gorge. We missed saying goodbye due to our stay at Swedish. We love you very much. You, and your music, are such a gift.