It is 4:15 in the morning. I am laying on a plastic cot in Owen's hospital room which he shares with a 14 year old girl, Louiza, who just recently had a tracheotomy due to her increased inability to clear her upper respiratory pathways. Louiza also experienced a birth injury and has a wonderful, loving family, including a younger sister (by two years) who doted on her when she came to visit today. Louiza's mom, within an hour of us settling into the room, had reached out to us, told her story, written down the name of a close friend in L.A. who has a child who has successfully been treated with the ketogenic diet and offered any support she might be able to provide while we are here. This is how it is in this newest community that we belong to.
I am awake because Owen knows he is in the hospital. He has so far slept for two hours, in one hour increments. I have slept for perhaps a half an hour. This is on top of the three fairly sleepless nights we had at the outset of the trip due to Owen's newest set of teeth coming in. Kelsey is sleeping at the hotel room tonight - I get my night of luxurious, uninterrupted sleep tomorrow night. I think the last time I had more than four or five hours of sleep was before our trip to the Methow Valley in mid-May, before Owen's spasms returned.
Owen started the ketogenic diet this morning and so far, everything is going very well. His seizures are, in fact, down by about 50% as of this evening. We were very encouraged by our conversations with Dr. Olson, the nurse practitioner and dietician during our various consults with them today. There is such a good chance that this will work, either entirely eliminating O's seizures or reducing them significantly. Dr. Olson's goal is the same as ours and he sees it through with many patients - get the diet to work and then wean off the medications. We are being cautiously optimistic as there can be the "honeymoon" period even with the diet as the one that we saw with the Vigabatrin (which is the first thing Dr. Olson said we should wean off of should the diet work) where it works for a few days or a couple of weeks and then the spasms return to their previous levels. But the fact that we are seeing a response is good news indeed.
Many of you have asked about oral feeding or continued exploration of this while on the diet. The dietician raised her voice and said, "No, no, no," when we asked about this today. She reminded us that we had prioritized seizure control when we chose this diet and said that any little bit of food thrown into the mix could cause a spike in seizures (we had read this) and set Owen back. It is true - the seizures are our primary concern and are what is diminishing Owen's quality of life as well as ours. Getting him to take food orally is not a high priority and, as the dietician said, many parents struggle with this issue but are able to get their children to eat orally once they are off the diet, even after a couple of years. If we can get the seizures under control, I can live with that time frame and deal with this issue when the time comes. When you are the parent of a child like Owen, you realize... one thing at a time.
We had a wonderful visit with Mac and Margery (Grandpa Marshall and Nai Nai) and were sad to leave as we always feel so at home there. They sent us off with goodies from the Santa Rosa farmer's market which we had picked up the day before as well as plenty of other yums made with love. I don't have access to the camera right now, but will post some photos when we return home.
Our hope is that O continues to tolerate the diet and that we can begin our journey home on Wednesday afternoon. He started on 1/3 strength ketocal (formula for tube-fed keto kids) today, will go up to 2/3 strength tomorrow and full strength on Wednesday. If he does not tolerate the increased strength formula well, we may be here as late as Friday as we take the process slower. This would be such a bum deal since Laura gets into to Seattle on Friday (she planned her trip before we knew we would be having to make this trip during these dates). But we're hopeful that everything will work out fine...
Thank you for all of the emails and phone calls. And congratulations to Spencer and Elizabeth in Indianola who had a baby girl on Saturday night!! Big thanks to Kelly for calling and spreading the cheer way down here in Palo Alto. As I type this, I'm thinking of new Indianola babies, our garden, the beach and Dutch. It will be so nice to get back home.