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.

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!

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.

Wistfulness

I've been doing a lot of "blog hopping" lately and I've come across some wonderful blogs. I wish I had known about blogging, or even computers back when Taylor was born. I would have loved to have chronicled our journey from the very beginning.

Alas, I did not enter the computer age until relatively late in my life...2001 to be exact. I didn't learn about blogging until a couple of years ago. Now I know more about computers than I really want to know. *laughs*

Taylor has had so many surgeries and so many procedures and they are all in my head as well as the entire list of seizure medications we've been through. However, I don't have a recollection of my day to day emotions when Taylor spent most of 2003 in the hospital…first because of nonstop seizures, then the brain surgery, followed by the stroke, with inpatient rehab at Children's Healthcare of Atlanta.

I remember bits and pieces from that time. I remember all my belongings in storage because there wasn't enough money to keep an apartment and stay at the hospital. Let's face it…I lived at the hospital anyway, so why pay rent when you can sleep on one of those "oh so comfy" parent couch/beds?

I've also realized that as Taylor gets older, I've become less aggressive with trying to find cures and treatments. It's not that I don't want my child to be healthy. It's more because I know that my child is medically fragile. She's had 20 more years on earth than anyone said she would. I don't want whatever time she has left to be filled with needles, tests, surgeries, and drugs. It's bad enough taking her once a month for her port flush.

Sometimes I wonder if I'm being a bad mom. There is that selfish part of me that wants my child here with me forever. That conflicts with the part of my mom self that just wants my child's life to be happy. Taylor has very specific things that make her happy…her mp3 player, throwing toys over the shower curtain and into the tub, playing Sesame Street Toddler on her computer, being able to lay in her bed and flip channels on her TV with her remote, caffeine-free diet coke, and going to school.

That's Taylor's life and I don't want to inject doctors and hospitals in there unless I absolutely have to. The biggest thing I would love is to take Taylor's seizures away. That is what interferes with her abilities. Unfortunately, her brain keeps finding ways to seize no matter what we do.

I thank God every day that he gave Taylor to me. She is loving and happy and that's all we can really ask for our kids.

Summer Vacation

We reached the middle of our first week of summer vacation and we are still alive. I don't know if I've mentioned how much Taylor loves school, so just in case…SHE LOVES SCHOOL!!!!

Taylor gets bored easily and when Taylor is bored, we all have to suffer right along with her. She needs the constant stimulation that school gives her and this summer; I'm just not able to take her outside and do a lot of things with her. We run our business from our home and I am needed here to answer the phones, do the bookkeeping and handle the customers.

Once my middle daughter's background check goes through, she will get paid for watching Taylor…gotta love respite care. I know that it's hard on Taylor to be home all day…she has the attention span of a gnat. She isn't really verbal so most of the time, I know I'm probably missing whatever point she is trying to make when she starts making a bunch of sounds. That must really be hard, to want to communicate but just not have any words. She does sign some things and she actually has about a 10-15 word vocabulary, but that is just not enough some times.

Thankfully, Taylor does qualify for extended school, so she will start that in July and go through August. Unfortunately, Taylor turns 21 before the start of school in 2011, so this coming year will be her last. Where we go from there, I don't have a clue. They say a work program, but honestly, how do you find a work program for a 21 year old toddler who can't be left alone because of constant seizures?

That's one of those things I'll just have to figure out in the coming year.

Divine Intervention

I wrote this about 9 months ago before I got the idea to start putting all my writings about Taylor in an online journal. I happened to find it tonight tucked away in a folder and thought I would publish it here. It was very nice to remember how I felt.

You know, there are those times in life when you realize that Someone bigger than yourself is directing what you do. I had one of those days today. It's not that i don't believe in God…i most certainly do. I just have some trouble right now reconciling religion and the way I live (not being married to my significant other). Okay, enough about religion. This entry has to do with being directed by God to a place where I was needed.

So,I decided to run to the grocery store to get a few things. I didn't really need to go, but I figured, "why not". As usual, when Taylor is home, I take her with me. She loves going to the store. She has quite a few "friends" there. By friends, I mean employees. They are always so sweet to her.

Anyway, Taylor and I finish shopping and head to the checkout line. I was going to go to the Express lane, but thought I had one too many items, so I headed to the next one. The cashier smiled at Taylor and then she started to tear up. She apologized and then went on to tell me that her 8 year old son was hurt by someone when he was 7 months old and was now profoundly developmentally delayed with seizures.

She told me that she had been feeling down all day, but that seeing Taylor gave her some hope for her child and what he may be like as an adult. Taylor was being her normal cute self and that was the best compliment that I could have ever gotten about her.

She needed to be lifted up today and the fact that Taylor and I went to the store and ended up in her line was not a coincidence. To me, it was "divine intervention". God put Taylor and I in a place to be of help to someone who needed lifted out of the despair she was feeling. By doing that, we helped her, but I was also helped. I was shown that my profoundly, developmentally delayed child has a purpose in life, other than being my baby. She can be an example of what God's love on earth is like.

Decisions

I haven't had much of a chance to write here. Things have just been so hectic right now. My daughter and her 2 kids moved to Oregon in April and have been staying with us. Ally is 20 months old and Gavin is 5 years old. He also has Aspergers so it's been quite the challenge meshing everyone together.

All and all, it's gone surprisingly well. Taylor was a little put out at first because she could no longer have complete and total reign over her kingdom (her room) but she has adjusted well. She absolutely loves helping to take care of Ally. It is a little hard for Taylor when we go to the park. She still has the mind of a toddler and wants so badly to play on the playground equipment, but she is just too big. They don't think of developmentally delayed "children" when they put these brand new play structures in. Sometimes it's really hard to sit and watch her want to play so badly and she just isn't able to.

I am in the process of deciding whether or not to put Taylor on the new seizure medicine that was just approved for Lennox-Gastaut seizure disorder. Looking over the side effects of the drug makes me very uneasy but then I am not sure how long we can just let her have so many seizures every day. There is nothing to say that this drug will or won't work but it's just a really hard decision. She can't tell me how the drugs make her feel and I don't want to mess her up any more than is absolutely necessary. She is already on 3 other seizure medicines. I would hate to think of how many seizures she would have without those drugs. There is a 50/50 chance that the medicines aren't really helping at all or it's the reverse and we have no idea how many seizures they stop.

I hate these kinds of choices. There is nothing that seems totally right.