Tuesday, September 14, 2010

The sun is up! Well... almost.

I'm looking out from the 9th floor at Swedish, across the east side of First Hill and out over Cherry Hill. It's a lovely view, classic Seattle, although the way the fog is settled in, between the houses and buildings, it looks like a cold day in late October. But judging by the people I see, walking the streets below, it is still a relatively warm day in September. This is how one gauges the temperature from inside a hospital room...

I just recevied my A La Carte breakfast from the cafeteria. Scrambled eggs, toast, bacon (!) and a LARGE coffee. Owen slept from 9:45 pm until 12:45 am last night and then from 5:20 am until 7:45 am. This is how it's been since late July.

Our neurologist is due for our in-room consult at 11:00 am to discuss the findings and, The Plan. Hopefully (please, please, please), the EEG technician will arrive around noon or so to start to wind things down and begin the hour-long process of removing the leads. My hope is that we are on our way home by 1:00. It never seems to go that quickly or smoothly, so I'll be elated if I can eat dinner, tonight, at home with my family.

Since the neurologist can view the EEG remotely, and does so throughout the twenty-four hour period, he has a good idea of what things look like - whether he needs more data or if we can be set free soon. We have been able to capture two of the "acute pain episodes," so will know definitively if these are seizures. This is a very good thing. 

The other possibility is that we stay another night. Long story, but we requested in June that a sleep study be done in conjunction with the 24-hr EEG as Owen's sleep is so poor and we absolutely must try to help him sleep better - so that he can learn and develop to his potential. My sense from our night and the data that was collected (the sleep study technician stays in the room all night to assess and fine tune the data and was forthcoming about what he saw) is that Owen may have sleep apnea - either induced by seizures or the one of the underlying causes of his seizures. We suspected this. 

Strange as it may sound, it is exciting to have all of this data - practically every square inch of Owen's body was covered in leads, sensors, and monitors assessing his breathing, body movements, fluctuations in muscle tone, respiratory functions, the data from all of which will be used in conjunction with the EEG tracings to create a picture of what his body and mind are doing and how this is affecting his sleep and seizure activity. I have developed a love-hate relationship with all of this medical technology. Beeping, bright lights, internal fans cooling computer processors... Regardless of my emotions, I also appreciate this technology and most oftentimes, it makes Owen's life better and his experience, clearer. What IS clear, and now confirmed, is that he's having increased seizures (the horrid and insidious infantile spasms) as he falls asleep. We noticed this increase a few weeks ago, some days the increase more pronounced than others.

So the combined studies should tell us why he's so wakeful. Pain? Seizures? Sleep apnea? Uncontrolled muscle movements? 

Then we make The Plan.

2 comments:

SeattlePam said...

Sending love, peace and a wish for your Plan to introduce itself to you with certainty and hope. Thinking of you both this gray morning... xoxo

Laura said...

Please call me after you get some rest to let me know the results of all the tests. Love you.