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.


Anonymous said...

*gives sis Dawn HUGE HUGGGGS* my prayers and sending positive energies/thoughts go out for you and Princess Taylor...am so sorry that you have to go thru this. just know that you have great friends here online who do care and want the best for you,Sir,other daughter and of course Taylor to have good reports and peace of mind...Waterbear and my self send our love to you all.

Liz said...

I just wanted to say hi and that you've inspired me today. I found you through comments on Bennetts blog.

My daughter has IS which we believe was caused by chemotherapy she received for leukemia. Some days I have difficulty envisioning what the future might be like.....and can I really do this? I just read the first 10 entries on your site, and your optimism and live for your daughter shine through in all of them.

So thanks for the inspiration! And your daughter is beautiful. Happy late birthday to Taylor!

Liz said...

I meant love (not live). Darned iPhone and my big fingers!