Sick Week

It's been another long week. My last post was Monday night from the hospital. Little S was getting another round of twenty four hour brain scans to see how the medication was affecting her activities. From what the can tell based on the scans, not a whole lot of dif so far. I can understand them trying to underdose rather than overdose with someone so young, but so far all that's happened is that they've upped the meds so far and we can't see a noticeable improvement.

I wasn't feeling that great before I camped out in the hospital room, but I felt a lot worse when I got home. The last two days I've been fighting a cold. A touch of a sore throat, but mostly just a sinus thing. I would be fine sitting still, but any movement of the head and I would feel like I had a vein in my head that was about to burst. There are a million things that the wife and I need to get done, and I couldn't do any of them. I was pretty useless.

Today, I was feeling a little better, not fully recovered, but somewhat better. But Little J seems to have picked it up. I picked her up early from daycare yesterday with a temperature of 103. Today, she was a crankly, clingy, needy little thing. I felt really bad for her, but there was only so much I could do to make her feel better. She essentially sat on the couch all day either watching Dora, or Diego or her new Tinkerbell DVD. So what I've learned is the only thing worse than being sick is taking care of a sick three year old.

But worry as I might right now, I know she'll get over it. Is my future now such that Little S is going to need special attention like that every day? It will be really really tough if that's the case. Give me strength.

CURE

Last night I mostly watched the Yankee game. Another title on the way. But I happened to flip over to 60 minutes during a commercial break and caught David Axelrod. He's pretty much Obama's right hand man. He's always doing the weekend circuit advocating policy. It's what he does and he's good at it.

But this 60 Minutes appearance had nothing to do with politics. Instead the whole segment was on his role as a father for a child with epilepsy. His daughter has tried a bunch of different meds and had brain surgeries. It's clear that one of the things this guy is sacrificing to work for change is time with his daughter who he cares for very much. She's in her 20s now and it hasn't always been easy, but she seems good.

His wife also had to give up a lot. She dropped out of grad school to take care of her full time. After they saw her turn blue in her crib after a particular bad seizure. She's also head of a Chicago based group, CURE, an epilepsy foundation.

So one of the reasons I'm going on about this and epilepsy is that is one of the conditions my little girl has. And it was very helpful to see that the Axelrods have managed to work though this. I hope it's something we can to.

I'm planning on signing up with CURE and making a donation. I'm hoping some people might read this and consider a donation as well.

Another trip to the doc.

Yesterday afternoon featured another visit to the neurologist. I left work at noon for a 2:45 appointment and due to rain and traffic in the city, didn't get home until 5. I really can't believe that this is where we're being sent for medical care, but we've asked and there is not a lot we can do to change things at the moment.

In years past, open enrollment at work took a couple minutes to look through the best choices. Now, the choices are suddenly a lot more complicated. It's not just about the primary care physicians, but the specialists, and how much it may cost to see them, and how far we may have to go. We'll have choices, but it's complicated. Chances are we won't get it perfect, but hopefully, we just don't do anything too stupid that blows our coverage somehow, now or in the future. HMO vs. PPO. Lots to look at. PPOs seems to come with more choices, more costs, and a lot for fine print. The fine print scares me a little.

Anyway, the news isn't any better. They're still doing some investigations into a seemingly endless number of possibilities. The doctor is ordering several more tests, some of which require prior authorization from insurance, are done at only a few selective locations, and probably cost a bundle. Hopefully, none of these show Little S to have more issues than we already know about. Sadly enough, that's about all we can hope for at this point.

The Medical Wrangling

So I know I haven't gotten into the "what's wrong with the little one?" discussion yet, but there are a couple other aspects of the whole experience I want to go through first. Not that these are the most important things, but maybe there are things to learn through all this.

When the general pediatrician first identified a problem she wanted to refer us to a specialist, a pediatric neurologist. There isn't one in her general practice and her practice has a contract that refers us up to the city. Given the other options in our area, that really wasn't our first choice. We'd rather be closer to home and closer to what we believed our better experts. But this is how our insurance went. She needed to send us to someone "in contract". Having never had any real significant medical issues before, this had never been something I looked at during open enrollment. From now on, not only will I have to look at where my primary care services come from, but the specialists as well. Hopefully, most of you don't have to do that.

We were happy that the neurologist was able to fit us in his schedule right away. We haven't been that happy with him since then. He seems intelligent, but it's clear to him, this is a "case" rather than a family going a little nuts because the little one is sick. He has said a few things that really aren't the best bedside manner.

One thing that really irked me is when he said he would drop by the hospital the next day to see us. I stayed at the hospital that night and the next day. I asked the nurses and they said he usually dropped by in the early afternoon. Pretty much all day I didn't go anywhere becasuse I wanted to be sure that I didn't miss him. He didn't show up until 7:30 at night. Instead of going to the store or just a walk, I watched football all day. I suffered through the entire Cal-USC game because there wasn't much else to do. Pretty rude.

One last thing about the doctors. I guess it's fair that all the doctors have their own opinions. The developmental pediatrician doesn't look at the same things as the radiologist, or the neurologist. They all have different specialties. Some are telling us that it's going to be really bad. And others telling us not so bad. With treatment and therapy things will be a lot better. In other words we're hoping for the best, but realistically, we have no idea who to believe right now. I guess none of us really have a crystal ball in these matters.

Finding Normal Again.

It's been over a week since I've been to work. I go back tomorrow. Usually when I've been away from work for a while, I dread going back. I know that there will be tons to catch up on, phone calls to return and a million emails.. This time, I'm pretty indifferent. I'm going back because this is the job I do. And they pay me for it. I'm just going back and hoping that it will somehow feel the same as it did a couple weeks ago. Something akin to normal.

Not going to work doesn't mean that we haven't been very busy. We had a three hour appointment with a doctor and a social worker yesterday. Today we had three appointments for the little one that were spread out enough that they took all day. We left the house at 9 and didn't get home until 6. And that doesn't include my camping trip at the hospital. I slept over at the hospital two straight nights. More on that later.

Given the problems, everyone has been pretty helpful in getting things scheduled as fast as they could. We've got a lot of the initial meetings out of the way, but there will be a lifetime more. A bunch will just have to become part of the regular routine and we're just going to have to adjust.

It seems like forever since I've blogged.

Little J loves Puffins cereal. At about the 18 month mark it surpassed Cheerios as her must have food item. The other day she pointed at the box at the bird and said, "What's that?"

"That's a Puffin," I said.

She pointed at the picture of the cereal under the bird and said, "No, Puffin." I wasn't sure how to explain that the bird on the box was actually a puffin and that's what they just named the cereal, and no she was actually eating a wheat product and not actually a bird. Hopefully, she'll just work that out someday.

I start with that little lighthearted anecdote, because it's too hard to talk about anything else right now. It turns out my little one is sick. And not the sick that is going to get better anytime. It's been a brutal week of trying to keep up hope with bad news followed by more bad news. I can't remember the last time I actually cried, before this, but I feel l've cried or been on the verge of crying for much of the last few days.

We've got some answers now. Not all of them, but at least enough to start a game plan. The first thoughts before the first steps in a long journey.

I'm sure anyone reading this will have a lot of questions, but that's it for now. More later.