Thursday, August 27, 2009

Seizure Salad

I'm sure you are probably wondering about the title of my blog. I have always dealt with things using humor. It just makes things easier for me. If I don't laugh, I'm going to cry and laughing happens to be more fun.

The phrase "seizure salad" came into being thanks to my brother. Years ago my brother took my girls and I out to dinner. I was a single mother trying to raise three girls, work full-time and deal with Taylor's ever increasing seizures. Taylor was having a particularly bad seizure day. She also happens to love salads. She won't eat cakes, candy, or other sweet things but she will devour a salad.

Anyway, the waitress came to take our order. As she went around the table asking everyone what they wanted, she got to Taylor and asked what she wanted. In the middle of asking that, Taylor decided to have a huge seizure. Without skipping a beat, my brother told the waitress that Taylor wanted a "seizure salad". She kind of looked at us and asked did we mean "Caesar salad"? My brother said no, for her, we call it a seizure salad.

Needless to say, we all started laughing hysterically. I couldn't help it…it was funny. The waitress laughed for a second then I guess she felt bad for laughing even though we told her it's okay it's how we deal, she wouldn't wait on us anymore. She was angry that we made her laugh at that.

So now, when Taylor has really bad seizure days, we call them seizure salad day. I'm sure that is not as funny to everyone else as it is to me, but it still makes me chuckle thinking back to that day.

It's been a rough day for Taylor today. All her seizures were big one and they just kept coming. She couldn't even enjoy the park when her sister took her today. Normally Taylor loves to swing, but not today. She just sat on the bench, seizing away.

I've decided that in the next few days, I'm going to write Taylor's complete history from birth until now. I think it will be better if I break it up into parts. It's just all in my head so it will be nice to have it written down in one place.

Tuesday, August 25, 2009

A Long Story

Taylor right before getting her PICC line.

We are going through another VNS issue. Taylor had the Vagal Nerve Stimulater implanted way back in 2000. She was 11 years old. Taylor has Lennox-Gastaut so her seizures have been very hard to control. She has Trisomy 9p which has left her profoundly developmentally delayed. When the neuro-surgeon thought it would be a good idea to put the device under her breast tissue for cosmetic reasons, I thought that was nice. I wasn't thinking about her as an adult female and realizing that she didn't really need that area to be cosmetic. No one was seeing her there but me, her sisters, or a healthcare provider. I just wanted to stop the constant seizures.

However, that decision has come back to haunt me. In December of 2007, Taylor's VNS battery needed replaced. Now an ENT does the procedure because he is more familiar with the neck. He was not used to having to dig in breast tissue to retrieve the unit. They are now placed in the chest like a pacemaker.

Not to be crude, but Taylor is about an A/B cup so she doesn't have a lot there to begin with but the surgeon still had to dig around to retrieve the unit and replace it with a new one. They just hook up the old wires to the new VNS. They don't really unclip the wires from the vagal nerve. He finally finished the surgery and closed her up. He used the original incision site from 2000…he didn't have much choice. Well, a few days after surgery, we noticed that Taylor's surgical site and breast were swollen and very red. It was the weekend so I took her to Urgent Care. They took one look at it and sent us next door to the ER. They said it was post-op infection and Taylor needed IV antibiotics. Now, Taylor's veins are pretty well shot because of so many surgeries/blood draws so it took 4 different people 7 sticks before they got a vein. They finally got an anesthesiologist to get the IV in.

So, home we went with a hep-lock and orders to return to the infusion center for the next 10 days for IV antibiotic therapy. Monday when we went to the infusion center, they saw how bad Taylor's veins were and called to doctor for an order for a PICC line. Anyway…the PICC line was a success and we spent the next 10 days making daily treks to the hospital…including Christmas Day. She ended up keeping the PICC line for several months which as it turned out was a good thing.

Several months after the initial surgery, I was getting Taylor dressed when i noticed that something wasn't right about her chest. To my horror, the VNS implant had fallen down in her chest and was now pushing on the scar. We made an emergency appt. with the doctor and he was horrified. He scheduled an emergency surgery to try and fix it so it wouldn't pop out of her chest. He did his best to try and shove it back up and make a pocket for it above her breast tissue. That was last year.

Here we are again. It's now fallen again and the doctor is in the process of scheduling another surgery. He wants a general surgeon to help with this one. They are going to go in the previous incision, disconnect the wires, pull them up in her chest, and make another incision where the implant should have gone years ago…below her collarbone and put it there. The doctor says there may be a chance that they "wreck" the implant or the wires not go where they want them to. In that case, they will just take it out, clip the wires and close her up. If they find that the VNS was helping her seizures at all, they will schedule another surgery to try again with a new one. At least now, she has a port.

Now, when it was first implanted back in 2000, it never worked for her. Her seizures continued to get worse. In 2003 she had a corpus callosotomy. Of course, being Taylor, she couldn't do anything easy, so she had a stroke the day after surgery. Of all of Taylor's medical issues, her seizures have been the most problematic. She is diagnosed with intractable seizures(Lennox-Gastaut)…nothing has worked so far.

Sorry for the long post. It's just been long overdue and I needed to get it all out.

Tuesday, August 18, 2009

Happy Birthday Taylor!

Taylor turns 20 today. I've learned a lot more about medical issues than I ever wanted to know. I've shed more tears in the 20 years than I ever thought possible. I've spent more nights in a hospital in the past 20 years than I ever thought possible. When you add the total number of nights that I've spent sleeping on an uncomfortable, vinyl pull-out couch in a hospital room listening to the beeping of monitors and IV pumps, it totals over 3 years out of the past 20.

However I'm not going to talk about that today. I'm going to talk about the smiles she's given me. No matter what problem comes up, Taylor smiles through it all. I've seen her fight to re-learn how to walk and talk (well Taylor talk) after suffering a stroke after brain surgery. She wakes up in the morning, smiling. She is the most loving and affectionate "child" I've ever known.

Taylor is funny, silly, happy, loving, strong, resilient, and stubborn. She has been the major focus of my life for the past 20 years. People around town know me only as "Taylor's mom". She has touched the lives of a lot of people.

To me, Taylor is hope and I choose to celebrate the good today. Happy Birthday precious girl! We love you!

Wednesday, August 5, 2009

The Place I’m At

I've really put off writing this post here. I guess because it feels like I'm giving up on my child. I would like nothing better than to bury my head in the sand and say that everything is just fine and Taylor's seizures aren't quickly taking her away from us.

None of the medicines, not the VNS implant, and not the corpus callosotomy has taken away the seizures. The brain surgery did stop the drop seizures for about 4 years and for that I am eternally thankful. While the hundreds of absence & complex partial seizures she has continued to suffer from have not been great, they have actually been more of an annoyance than anything else.

All that is changing now. She has started having more and more drop seizures and some days, it's just too hard for her to function. We've watched her lose abilities and become unable to do some of the things she used to do. She can't carry her food/drink to the table any more for fear of dropping everything during a seizure.

We've been told that it's probably best that we try and plan "things" now as it will too hard when the time does come. I always thought her heart defect would eventually be what caused her the most life-threatening problem. No, it's going to be her brain. That part of Taylor that makes her the happy, loving, funny, silly person that she is will eventually be what takes her from us.

I realize that no one knows the future and Taylor could outlive me. I also know that the signs I'm seeing now tell me that I need to cherish every day I have with her, knowing that one day, in the near future, she could just slip away.

I'm torn between pestering the neurologists for something that will help and not filling up what could be a short time left here with tests, needles, and doctors.

Yeah, so that's where I am right now…torn between reality and denial. I think I like floating down that river better.