Sunday, January 24, 2010


It's 3 am in the morning, and I have been up since midnight. I am taking the night shift, since Jacob is not feeling well. He has had a prolonged seizure with fever. The seizure has stopped, but the fever persists as well as the high heart rate. In the past, I would have rushed him to the ER. Found a pair of sweat pants, grabbed the diaper bag and the feeding pump and drove in in the middle of the night. I know the familiar way to Children's in my sleep.
Tonight, I know that I have another 50 minutes until I can give Tylenol, and that might do the trick. Jacob's heart rate and fever might settle in, and we might have no sign of illness by the morning.
Seizures and fever over night seem to be a new pattern we have started to see a couple of spread out nights now - or there is of course always the possibility that Jacob might be coming down with something. I am giving Tylenol a shot before any further actions.
Care has changed. We're moving more and more of the care to our home. I know I can always call an ambulance, if Jacob's breathing gets impacted, but I also know that this might be part of Jacob not being able to regulate his body temperature. We will know in a few hours.
Sleep deprivation is a fact. I fell asleep on the couch at 9 pm last night, got in 2 hours of sleep before my night shift. I had a similar night just a night ago. You might be thinking that with night nursing this should not be a problem, but we just had our first week of 5 nights covered, and she did wake us up two of those nights as she is getting used to Jacob's seizures, fevers, and other things.
On a positive note, we got this great Smart Vest this week. It's a vest that does the best CPT (chest percussion therapy) you can imagine. For 15 minutes twice a day, Jacob gets the best vibrations going on his lungs and it looses up his secretions. In a few days, we can already see a difference in the amount of his secretions. YEAH! They used it on Jacob in the hospital in June, and he really faught it. Now, he lays in bed with a big smile as he gets his massage. Sarah loves it, and asks if she can get some good vibrations as well!
Grand pa is here. He picks up Sarah from school, plays with her and does her home work. He even got to participate in the last girl scout baking event, teaching the girls how to measure liquids! Tomorrow, he will accompany her to Swedish school. Jacob gets more attention. He loves simply sitting on grand pa's lap, cuddling and getting books read to him. It's great with an extra pair of hands in the house for Joakim and me, and some great company!
I think this is the first time I actually write at night despite me tossing and turning in bed many times - both at home and in the hospital. I am hoping this will be a single post, not with a follow up on illness tomorrow...
I hope you're all sleeping tight tonight.
Love, Maria.

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