Archives for August 2009

Let the Good Times Roll

A little over two years ago a doctor sat down with me and my husband in Charlie’s hospital room and explained that an ultrasound had revealed wide-spread bleeding in his brain. The bleeding was a side-effect of being placed on ECMO–a heart/lung bypass machine. His little heart had beat too fast for too long and had just given out. When the machine that’s saving your life is also killing you, the future becomes very grim indeed. I’ve read up on it since, and I’d say that Charlie’s chances of making it through the first week of life were probably less that 10%–really, probably more like 5%. To say that was the worst day of my entire life still understates the magnitude of the feeling. To know that your child is sick is one thing–to know that nothing can be done is another. I think it would be more accurate to say that on that day, June 8th, I fell through the looking glass and have since been navigating a strange, wacky world full of white coats and scrubs.

They told us that they’d be running a test to be sure, but they suspected he was already gone–brain dead. They told us that we should be considering options for “withdrawing support,” which is doctor speak for turn off the machines and let your baby die. Then they put us in a small room with a priest and a social worker.

It was a hard day.

Charlie and I were in two different hospitals–he needed a level III NICU and there was only one in the area. I’d had a C-section the morning before and still had an IV in my arm so I was limited in the amount of time I was allowed to visit. Eventually I had to go back to my hospital room. My husband went home to change his clothes and there I was alone.

News like that makes you hollow. The part of you that feels stuff has been amputated and the rest of your brain and body are still ticking away. I wondered about thank you notes for the baby shower I’d been given five days earlier. What would we do with all the toys and baby furniture? I tried to recall the grief advice that’s printed in the back of What to Expect When You’re Expecting.

I wasn’t prepared to plan a funeral, but I eventually decided that I should call some people and tell them what was going on. I called my Arkansas friends, apologized for making them sad, and then hung up.

I knew then that I had to call my friends from college. I’d had them each send me their contact info so I could call them when my son was born and my husband had printed everything out for me the day before.

But I didn’t want to do it.

When, for whatever reason, a pregnancy doesn’t go according to plan, you blame yourself. Even if rationally you know that sometimes stuff just happens, you can’t help but feel that you’ve fallen down on the job. That some way, some how, you could have done something differently and your baby would be fine.

So I didn’t want to call my friends and tell them that I’d failed. That’s I’d gone through thirty-seven weeks of pregnancy and now there would be no baby. It was like running a marathon and then breaking your leg in sight of the finish line.

I finally called the girl who had stood in my wedding as Matron of Honor. I told her the news and explained that I just couldn’t’ call anyone else–it was too hard. After she discerned twice that I was in no physical danger, we hung up. A few minutes later my phone rang and each time I hung up, it rang again. Each time it was a familiar voice calling from a faraway state in the middle of a work day–and they were hopeful and reassuring and exactly what I needed at that moment. Just typing these words–hell, just thinking about it–brings tears to my eyes every. single. time.

When I was released from the hospital two days later, a beautiful bouquet of flowers awaited me at my house–the card read simply “thinking of you.”

I had the opportunity to spend this weekend with most of these women. The social butterfly of the group arranged a birthday weekend in New Orleans for herself and she and others who have moved out of state flew in. We shared hotel rooms, ate fattening food, drank, danced, and talked and talked and talked. It was a wonderful, tiring time. It nice to know that every once and a while you can slip back over to the other side of that looking glass and just be.

Wrapping Things Up

Unnnamed piece done for a friend who requested a purple and yellow fleur de lis.

Well, I called and scheduled an appointment with the neurologist. They couldn’t get me in until The second week in October, so I’ve got a little more time to get prepared. I’m waffling. I’m scared to death of the idea that Charlie could get hurt and it would be MY FAULT. It would be different if my husband and I shared in these decision more equally, but for the most part, he’s scared too and wants me to pull the trigger.
I have found what I consider another option: I’m considering asking the doctor if we can try Keppra. Doing a little research I found this web site: Crazymeds. It’s not written by doctors or anything, but that’s kind of why I like it. It’s written in language I can understand and you can tell that the author is pulling info from a number of sources–not just the write-up from the drug company. It’s still in the process of being created, so not every medication has a full write-up, but it you or your child is taking something that affects their brain then this might be worth a look-see.
Ok, enough about Crazymeds–Keppra! Keppra seems to have less of that sleep-inducing effect that you hear so much about with anti-epileptics. I’ve also had at least two parents on here leave positive comments about Keppra especially when compared to phenobarb. The only real issue as I see it is that Keppra is only approved as an adjunct for most seizure types (needs to be taken with something else). Of course, we don’t even know if Charlie is actually having seizures–he’s just high risk–so who knows what the doctor will say about that. There are also regional issues that you just can’t account for–different parts of the country tend to favor different types of drugs. I guess I’ll just have to wait and see what the doctor says. Patience is not one of my strong suits.
I’m also waffling on the Mother’s Day Out thing. I KNOW! I am so indecisive, right? Thing is, it’s not cheap. Also, it would take Charlie away from me for about five hours. I’m not sure if it would be a good thing–yay! I can get all my errands done! Or a bad thing–bah! that’s just more time where we’re not doing ABR or lessons. I am considering not doing MDO and instead getting Charlie into a monthly respite night. Basically, kids with mental or physical handicaps go to a church for three hours and sing songs, play games, and eat a meal. They are assigned a helper and everything. This would be good for several reasons: social interaction AND it wouldn’t interrupt the hours of the day when we normally have lessons/ABR. And I can’t deny the greatness of getting a Friday evening to myself once and a while.
I guess it would also be worth noting that Charlie social anxiety seems to be getting better. When we took him to the aquarium it was SLAMMED with kids and mommies and strollers and he did just fine. He just concentrated on the fish.
I guess I’ll also comment a little on his physical progress since I know there are people who want to know about this stuff. Charlie can now climb an eleven inch step on his belly. He is also actively trying to push himself into a sit. He hasn’t mastered it yet, but the intention is there and so is the movement–he just needs to get a little more comfortable shifting his weight onto his right arm. A final, smaller, but still important improvement is that he is starting to use a pincher-style grasp when he plays with his puzzles. We’re inching along over here, and it’s all good as far as I’m concerned.
I could go on and on with the updates, but I’ll give you a break now. I just wanted to add one final thing. Anat Baniel is a Feldenkrais practioner who broke off on her own and developed a whole practice working with children. She’s giving an all day web lecture online this Saturday. To go in person would be almost two hundred dollars. The web version will be fifty. Just something you could check out if you were interested.

He Knows What he Likes

Athough we’ve made some really great strides in this area, Charlie is still very left-handed. The right hand is in reserve, but he’s not one to use it very often.

Except when grilled cheese sandwiches are involved.
When eating a grilled cheese sandwich, Charlie will be eating a piece held in his left hand while desperately clutching another piece in his right hand. You know, just in case.

Goofy kid.
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