outta there!

Man, has it been a long week 12 days! So long, room 141-B! Sorry for the lack-of-updates - I can't believe it's been since Saturday that I last posted - but things have simultaneously sped up and slowed down, if that makes any possible sense. But, as the subject would indicate - finally, we are home! Evelyn is still experiencing seizures, but we (and the -ologists) feel reasonably comfortable, at this point, with the frequency, intensity & duration of them, in addition to Evelyn's general health, such as to be handled on an outpatient basis. The caveat is that her eating has been off, so right now, she's on an NG tube for feedings. That's the short of things. The gory details, as usual, follow....

the gory details

This was really just the week of wait-and-see. The hard thing with most anticonvulsants - or most other neurological medicines - is that they typically take a while to work. Levels must be built up over time (and often similarly ramped down, when a medication is stopped). Accordingly, "it takes a while", to see the actual result of a given medication. While this is clearly understood rationally, when you're pushing 11 days in a teeny-tiny half-hospital room with an alphabet soup of drugs being pumped into your baby, at times with little apparent effect - your capability for rational thought begins to diminish markedly. ;-)

In any case, over the course of this week, Evelyn was brought off of fosphenytoin and phenobarbital, had her Topamax doseage increased, and had Depakene added. Klonopin was also added once daily, and as needed for acute seizing activity.

Last Sunday (29-Jul-2007), things seemed to be a little better, seizure-wise. However, it was likely due to a big "bump" of phenobarb, and thus Evie slept much more than normal (her seizures typically manifest when she's waking up).

By Tuesday (31-Jul-2007), the seizures were returning to their earlier frequency (about every 3-6 minutes for an hour after waking up), though the intensity & duration weren't quite as bad - though we were seeing occasional "new" types of seizures, involving more jerking. Evelyn also wasn't eating very well. This could have been because of:

• the seizures
• the meds
• the seizures and the meds

Of course, neither us nor the -ologists would feel comfortable sending her home not eating, so it was really not a question at that time. Even so, every day when you hear "Well... Maybe just two more days..." - it doesn't do spectacular things for your morale. Monday or Tuesday was really probably the low point for Kim & I, emotionally: "The meds will take a while to work... okay, fine... Evelyn's still experiencing a number of seizures.... okay, fine... Each time you have to place an IV, you have to stick her 4 times... okay, fine... Another day or two.... okay, fine.... Evie's generally tired & cranky... okay, fine.... Not eating!?!? THAT'S IT - We've HAD IT!!!" Just physical & emotional exhaustion.

Of course, there wasn't much to be done, except press on & work through it. By Wednesday (01-Aug-2007), it was decided to go ahead and place an NG tube (nasogastric - tube through the nose) for feedings, as Evelyn hadn't really eaten at all over a 12-hour period, and had been eating very lightly otherwise. After placing it, she quickly packed on several ounces, but also didn't ... "eliminate"... very much, indicating that it was a well-founded concern, that she might be getting dehydrated.

As she was to come home on the NG tube, we had to learn how to deal with it. This includes inserting the tube (if you've never shoved a tube up your child's nose and down their throats to their stomachs, it's not a process we can recommend as "pleasant", for either party involved), checking the tube for placement (squirting a small amount of air in, and listening for it in the stomach with a stethoscope), and setting up/dealing with the accompanying feeding pump. And of course, Kim has been a champ at mastering it all. We're thinking maybe we'll get her back to school soon for her nursing degree, since it should just be a formality at that point. ;-)

At any rate, Thursday afternoon (02-Aug-2007), because feeding was no longer an health concern because of the tube, and the seizures were under ... "reasonable" control - still having them, but not quite as severely - we finally got our walking papers!

So, we've been at home for right at a day now. We're... settling in. It was very good to just "be here", and everybody sleeping in their own beds - at the same time - for the first time in 11 or 12 nights. For now, it's really been getting used to Evelyn's new apparatus & medication administration. Which hasn't been easy, per se - but is definitely better to do here than at the hospital.

Evelyn's seizures over the past day have been mostly - but not markedly - better. Her most recent "waking cycle" had a reduction in seizure frequency, with 14 or so extending over 2 hours, instead of the usual 1 hour.

So, anyway - that's the latest! Onward we go....