one med, two meds, red med, yellow med...

Okay, that title was a stretch, but hopefully you got the reference. ;-) Evelyn hasn't had a blue med (yet; and yes, she's had a red one), so we had to substitute in "yellow".

Just a brief update, because we realized we've been quite remiss! I can't believe it's been over 3 weeks - almost 4 - since we got out of the hospital. Most of that time has been dabbling with seizure medications, still trying to get Evelyn's seizures under control, to one degree or another.

It's been a bit of a trying time, to be perfectly honest. Very up-and-down. As noted earlier, Evelyn was discharged on a regimen of Topamax and Depakene, and Klonopin for acute seizing. Topamax brings with it the unfortunate side-effect of a loss of appetite, so Evelyn's been fed largely by NG-tube ever since. After a few weeks on that, it was evident that it wasn't really doing much, so Dr. Bernes began ramping down the Topamax, still keeping the Depakene, just to have something there. We then began ramping up Keppra, still working our way through the more "benign" medicines first (insofar as side effects go). After a while on that, Evelyn's seizures were still largely unaffected (50-60/day; 10-30s each). So, we began taking down the Depakene and ramping up Zonegran. Which is pretty much where we are today.

Generally-speaking, we've been very optimistic in the early days of a new medication, but then as we see no improvement, get kind of down, down, down.... so on and so forth. Evelyn's very much subdued, compared to your average almost-4-month-old(!), between some of the seizures and the drugs. Keppra and Zonegran are both (supposed to be) non-sedative, but Klonopin is a definite sedative. Thus, we try quite hard to be judicious with the Klonopin, but if Evie starts on a sustained (~10 minutes) string of seizures approaching 1 per minute (as opposed to 1 per 5 minutes), we usually administer it.

But, that's about the size if it - plugging away, trying to find what (if anything) will give her a little more seizure control. We're still feeding through the NG-tube, but Evelyn's showing a little more interest in the bottle, so we're still hopeful we can be done with that sometime or another. Again, absolute seizure control is not the goal - seizures will very likely be a part of Evelyn's life ad infinitum - but just some level of control of them so we can do other things, like play. :-)

Anyway, we're hanging in there, and we'll keep at it until we get there. Thanks again for all the thoughts, prayers & considerations - they really, really, really help. :-)

the brain post

Yep, you read it right. I started this way back in the hospital, since a) we had received Evie's MRI records, and b) we finally figured out the hospital had wi-fi.

Primarily, it's to maybe explain "why Evie had brain surgery when she was 2 days old."

The picture on the left is from just before she went into surgery (11-May-2007); the picture on the right was from about a month ago, when we were in the hospital (24-Jul-2007). Looking at the left picture, it doesn't take a brain surgeon to see (pun intended) - "somethin' ain't right". The white part is all water, either enclosed in cysts (choroid plexus cysts on the sides, and an arachnoid cyst in the middle) or built up in her ventricles (causing hydrocephalus), because the cysts were "blocking the drain". It's hard to see the "dividing line" of some of the cysts, but if you look close, they can be seen.


The grey matter is .... grey matter. ;-) Seriously, that's "good brain tissue". Thus the impetus for surgery can be seen - if you look close around the rim of the cysts - especially on the left side (actually the right side of her head - MRI images are flipped) - you can see a very thin, grey strip. That's compressed brain tissue. Ouch.

As discussed back in Evelyn's Story (The Longest Week), the surgery was an endoscopic fenestration of the cysts - in short, going in with a small cable, and popping them like water balloons. This would allow the cysts to drain, and when they drained, they would also begin to stop "blocking the drain" for the rest of the ventricular system. A reservoir was placed to collect any fluid if it did continue to build, in place of a shunt (a more permanent device that can have complications).

As can can be seen on the right - things have progressed very nicely since the surgery! The cysts have shrunk in size, "unclogging the drain", and brain tissue is growing & expanding. Yay!

don't forget the big syringe

We had a check-up with the neurologist today down at PCH. Which meant the inevitable task we'd been dreading had finally come: having to feed Evelyn "out in public" with her feeding tube.

Now, it wasn't really the "public stigma" or "embarrassment" factor causing this fear - I'm not entirely sure that'd bother us much anyway, but even if it were to - c'mon; this was the hospital we were at. No, it was the fear of the logistics involved with such a task. The pump, and the feeding bag, and the formula, and the syringe to flush the tube, and the medicine for her 2:00 Depakene dose, .... daunting, to do it "outside the house" for the first time, to say the least.

So, Kim dutifully packed everything up, picked me up from the office, and we headed on down to the hospital. We had our meeting with the neurologist at 1:00pm (more on that in a later post), and then it was time for Evelyn's 2:00 feeding. So, we went down to the lobby of the outpatient building, and set up. Kim pours the formula in the newly-unsealed bag, and..... Yep; Mr. Murphy visited, and the bag had a leak.

At this point, we were a bit stressed - what do we do now!?!? We left The Big Syringe - to pump food in manually - at home! We had no other way to get the food in, except via the pump that needed a bag that had a leak! While I held a growing-fussier-by-the-minute Evelyn and schemed on patching the leak up with chewing gum, duct-tape, and/or bailing wire, Kim went around to see if she could find another feeding bag - we were at a hospital, after all!

Luckily, she found another mom with a child being fed via feeding tube as well, who had a spare big syringe, just in case. I then hand-pumped in 2.5mL every 30 seconds for 120mL (that's 24 minutes). ;-) While an onerous task, it wasn't so bad, and probably beat the chewing gum, duct-tape and bailing wire solution I had drawn up.

Lesson learned: Don't forget the big syringe. :-)

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....