Monday, April 30, 2007

Shunt revisions

Tomorrow it will be a year ago that G had his second shunt revision. I've been working out in the garden the last couple days, and I was wondering why it kept popping into my thoughts. A year ago I was feeling so hopeful with promise and thoughts of getting gardening done. Life felt good. And concerns started creeping in. I ended up going in on a Friday with him and spending the weekend. His revision was on Monday, and we took him home on Wednesday. It seems so weird that it was only a year ago.

Thankfully, this year I don't feel as if anything shunt related is going on. Well, I still worry, and I check the signs, but he seems okay. His burr hole "soft spot" has been fuller but not tense.

It took a lot out of me, and I ended up not doing any gardening when I got home. I think I did a few annuals around the yard, but I didn't do anything special.

There is such a love/hate relationship with that thing. I love it because it's the reason he's still alive, but I hate it because of its frailty. Not even frailty really, but it is flawed. Shunts are as dependent on the person in some sense as the person is on them. G has had 7 operations on his brain, and he's not even two years old. It really freaks me out sometimes!! Most of the time, though, we go on our merry way. :) His shunt failures/malfunctions have occured due to tissue blockage and the gel incident.

Well, I am going to try and not worry about the shunt this week. It'll probably me more on my mind, though, I think.

Friday, April 20, 2007

Gone and home again

One of the things about a hospital stay is life goes on for other people, but it halts and shifts for me. I come home, my house is still the way I left it, my kids are missing me, and life resumes, but I'm behind. I've missed something. I feel so alienated after a hospital stay.

G was in the hospital Monday and Tuesday night. He is still not himself, and today I'm getting worried. Monday he had these diarrhea diapers that were just water, and he had about 6 of them on the way home. I was cloth diapering, and it went surprisingly well and smoothly, but I can't say it was the most ideal circumstances in a five hour car trip with four kids. Fortunately, they didn't stink, the diapers that is. We got home, and he had two more diapers full, and then he vomited all over me. Oh joy. So, then I went into "I think we have to call about this" mode, cleaned up the floor, took my clothes off, put on some fresh clothes, helped get the kids ready for bed, as G laid on the couch without moving. He looked lifeless, and I was really worried he was dehydrating fast.

After we got the other three kids to bed, hubby and I took G to our the ER. MIL stayed with the sleeping beauties. Long story short, G got an IV, some blood draws, and an overnight stay. The next day, he seemed to be doing better until the afternoon, and then he became lethargic, hard to waken, and he had a low-grade fever. We stayed another night, with another dose of antibiotics, and Wednesday we took him to Children's for a CT and to see the neurosurgeon. It looked good, so we left very relieved.

The diarrhea has continued, though, and yesterday and today, he just passes out. Today, he was sitting in the high chair, and fell asleep. I know this happens with kids after a long day, but it isn't sitting right with me. So, worry, worry. And, OF COURSE, it's the weekend!! It's always the weekend. I remember the days when I used to think TGIF, and now I'm praying we make it through the weekend.

Coming out of the hospital, and getting back to Life is just a surreal experience.

Friday, April 13, 2007

What exactly?

I've had a struggle figuring out what I want this blog to be about. I have so many "things" to write about, so then I choose not to write about them at all because I don't know where to start. I don't think I'm a great writer, but I like to write.

So, anyway, as I'm not getting off to a great start here trying to say what I want to say, I'm going to try and be coherent.

I've been reading blogs recently of micropreemies, kids with cerebral palsy, and other things. I have a caringbridge page for my son with spina bifida, and at first, I wasn't sure that was what I wanted to write about here. I think I present a "nice" version and more of an update thing over there, and I think I could write more here about the reality of dealing with spina bifida and the stuff that goes with it. I also have a livejournal that I write about stuff with him frequently, but I'm thinking now, this would be a good forum to write an account of the stuff we're dealing with.

I also have three other kids, and I might be sharing things about them here, also. This is their story, also.

So, I dunno. I don't know if I'm interesting enough to do this, and I feel a little awkward about baring my soul. We'll see where this goes, I guess.

Wednesday, April 11, 2007


Things have been settling down. No neurological stuff seems to be presenting itself recently, thank goodness. In fact, he seems to be thriving, growing and learning. January and February were so incredibly stressful, I'm not sure what to think about them. March and April have been busy but mundane.