Sharing More of My Life

It's been awhile since I updated. Things here have been a bit hectic. Thankfully Taylor is doing much better and she has been fever free for almost 24 hours. If she stays fever free that means school tomorrow!!!

Most of my friends know that The Bossman (my BF) and I run a business from our home. He's been doing computer repair in our town for many years, just for another company. We recently celebrated out 1 year in business anniversary this past July. It is a very successful business and I love working with him. I am definitely learning to get my geek on.

Anyway, yesterday was "totally weird customer" day. Most of our customers know The Bossman because he also teaches computer classes at the local community college. However, we do get our share of customers that just walk in off the street. Some of them defy description. They bring in computers that are running Windows operating systems from the early 90s. They get really upset when we tell them that Windows doesn't support Windows 3.1 anymore.

I thought this post should be a little more about my daily life instead of just all the bad news about Taylor. While this blog will still focus on life with Taylor, I just decided to start sharing a little bit more of my day to day life.

What a 2 Weeks!

The past 2 weeks have seemed like a comedy of errors. So, we thought Taylor came through her surgery without any major issues. For the most part, she did. The pain medicine turned her from Princess Jekyll to Princess Hyde, but that was manageable. I'm not really sure why she reacted to the medicine this time as Taylor has had a lot of surgeries and painful procedures and been on strong narcotics before and not had any issues.

Then, we thought she was coming down with a cold this past weekend, so I took her to Urgent Care. They decided, after a chest x-ray, that she had a partially collapsed lung (not serious enough for chest tubes thank goodness) and the beginnings of bronchitis. We treated those symptoms with antibiotics. She seemed good to go with no fever for over 24 hours so I decided to let her go to school on Wednesday since it was early release anyway.

She seemed a little tired when she came home from school but nothing major. She did go to bed and actually fall asleep earlier than she usually does. Normally, I put her to bed, which means I give her snack and put her in her room where she will play until she falls asleep somewhere between 9 and 10:30pm. She is good about staying in her room unless she needs to use the restroom.

I always fall asleep on the couch while my better half works on computers until about 1 am or so at which time he'll wake me up and we go to bed. We happen to run a very successful computer repair business out of or home. He is very well known in our little town. Paul wasn't feeling well either so he had gone to bed at 10:30 so I just stayed on the couch. At about 2:30am, I woke up to the sound of Taylor coughing so bad I expected to see a lung when I went in her room.

I took her temperature and it was 102.4. Thursday morning, I called the family doctor and he saw her at 4. I was so not ready for a diagnosis of Swine Flu. I mean…really? Apparently, just as a precaution, when we were in Urgent Care Sunday, they had the IV nurse take a blood sample from her port and they also did a throat swab. I thought they were checking for Strep or something.

However, unbeknownst to me, they also were testing for the H1N1 virus. I'm guessing it was just an oversight that they didn't tell me because the doctors in the Urgent Care know Taylor very well and they are good with her and they always tell me what they are doing.

Her family doctor looked at the test results and told us about the Swine Flu. Apparently now, Taylor is the first one in the high school to have the swine flu so she is the wonderful reason for hundreds of those "a case of H1N1 virus has been diagnosed in the school so…" letters going out to all the parents. Yes, my child is special.

This flu is really kicking her butt. She was up most of the night either coughing or being really whiney because of body aches. It's really hard to know what hurts because she can't tell me. I just have to know the difference between a "pain" noise and a "I'm crabby leave me alone" noise.

She is spending most of the day in her room watching TV and reading her car magazines. She comes occasionally to throw her tub toys over the shower curtain and into the tub, then goes right back to her bed. I'll have to do a post on her obsession with throwing plastic toys into an empty bathtub.

Wow…this post ended up longer than I thought. I think I'm going to put my head on my desk ignore customers at the door…well, not really but it sounds good.

Sort of Wordless Wednesday

My daughter got a job yesterday…starting today. She is working with developmentally disabled adults. Hmm…wonder what experience she has. *smiles* Anyway, I'm watching my 2 year old granddaughter until she can work out daycare. My grandson is in school. I work as well so it's hard for me to watch them all the time. Ally and her Aunt TayTay are basically at the same age level. However, this is Taylor's room and Taylor's computer and Taylor's Sesame Street Toddler computer game. Now while she'll turn it on and let Ally play, even giving up her chair, she will not let Ally have control of the mouse.

Still, they play very well together…it just reminds me of David and Goliath, just with a nicer outcome. Wonder why? I find these pictures to be totally precious and decided to share them straight off my camera without editing.

From Sweet Princess to Princess of Evil

Taylor sleeping with the aid of Dilaudid after surgery

It has been a crazy week. Taylor seemed to come through her revision of the revision of the revision of the VNS surgery. Are you confused yet? In other words, in 18 months, this is the 3^rd VNS surgery she has had. I'm thinking this will be the last one…at least for 5 years. I won't even speculate if she will make it to the 5 years because I'm in denial of what the doctors are saying.

Anyway, after coming home, the pain medicine seemed to do a number on my normally very sweet child. She's had this medicine before since she's had a dozen surgeries so I'm not sure why the issues this time. I mean seriously…my affectionate, loving, sweetie threw lego bricks at me! She then layed on her bed crying and promptly fell asleep for several hours. After calls to the doctor and changes to her pain meds, she seemed a little better…until Friday.

She started coughing and running a temperature. We ended up going into Urgent Care this morning because her coughing made the incisions in her chest hurt worse. Now she has bronchitis. They also did a chest x-ray to make sure the surgery didn't cause a pneumothorax. Fortunately, while her lung is a little "under-inflated" (doctor's words), she didn't need to be admitted for a chest tube.

Why is nothing ever easy with Taylor? Why is a "simple" surgery never a simple surgery? Okay, sorry for being whiney. Taylor is just Taylor and after 20 years, you would think I would just accept the fact that Taylor does her own thing in her own time regardless how stressed it makes her mother.

This Elephant

I was reading someone's blog and they asked what it was that reminded you of your child/children. When it comes to Taylor, I remember this elephant.

Taylor had just had major brain surgery in 2003. The day after the surgery, she had a stroke. She remained in the PICU, in a coma, for several days. Her older sisters, they were 19 & 21, bought her this elephant in the hospital gift shop. They laid it in the bed next to her. When she came out of her coma, she grabbed this elephant and she would suck on its trunk. I have no clue why, but to this day, it's the only stuffed animal Taylor will have anything to do with.

Since we have begun the process of planning for when Taylor leaves us, I have debated whether or not I will put the elephant with her or if I will keep it to hold on to when those moments come.

Wordless Wednesday

Taylor and her sister on Monday.

Quick Update

I just wanted to do a quick update. We got to the hospital before it was light out (6am) which is way too freakin' early. They started the IV in her port but don't even get me started on why a port that can't handle the fluids of surgery and tests was put in. At least the anesthesiologist knows Taylor so he doesn't mind sedating her with the port and then starting a bigger IV after she's asleep in the OR.

They were able to move the VNS without major issues and she was out of surgery after 2 hours. Taylor's doctor is really good about staying on top of her pain because he said that is going to be one of her major issues right now along with avoiding any post-op infections.

Taylor is lying in her bed, flipping the TV channels, drugged to the hilt. She is supposed to rest for the next few days but keeping her down is a hard thing. Right now, it isn't an issue because I think this pain is bad for her. Normally she has a high pain tolerance. If she just lays around, she must be hurting.

I took some pics and I will post them later.

Just My Opinion

No matter how many surgeries Taylor has, I always find it hard to sleep the night before…even for those that are considered minor. Although tomorrow's surgery isn't minor, it isn't the same as her brain surgery…just somewhere in the middle. We have to be at the hospital by 6am. Don't you just love those early mornings?

You know, I follow various blogs and forums. It's amazing to me how some can engage in "my child's medical problems are worse than your child's". It just doesn't make sense. I've been dealing with a medically fragile child for 20 years. She has a lot of issues. Yet I don't discount those parents who are dealing with "so-called" lesser issues. It's my opinion that each person's problems or issues are as big to them as mine are to me.

Yes, my child has severe medical issues yet I chose to consider myself lucky because she has a sweet and loving nature. She doesn't have behavioral issues. Why can't all the parents of children with special needs lift each other up instead of saying your problems aren't as bad as mine.

Okay, I guess I need to shove the soapbox back under the bed. Can I claim the stress of tomorrow's surgery for making me rant?

One More Thing

Today was Taylor's pre-op appointment this afternoon. Of course, because it's Taylor, nothing can ever go smoothly. The doctor was feeling her neck when he looked at me and asked "what's this".

Well, I started looking and I noticed something I've never seen before…she has a lump near where her esophagus is. The doctor thought maybe it has something to do with her thyroid. Then he thought that maybe it was just her esophagus that was "moving around". He finally decided that this is something that is going to require an ultrasound.

You know, I pay really close attention to Taylor and I'm always looking for things that have changed or could be wrong because she cannot communicate those things to me. I just didn't notice the large lump on her neck. I guess it's a good thing that one of the surgeons is an ENT specialist. He said he'll order an ultrasound and we will see what's going on.

I just don't think I can handle "one more thing". I know that sounds bad because technically, I'm not the one that has to deal with it. Taylor does. She's the one that is going to have the pain from surgery on Monday. She is the one that has to undergo test after test…procedure after procedure.

I guess I'll do what I always do…stay strong and do whatever I can to make Taylor comfortable and happy…you know, the MOM thing.

Surgery is Scheduled

Taylor & Daddy @ the Circus

The surgery has been scheduled for September 14^th. We have all the pre-op stuff going on next week. At least the surgeon is having the blood drawn when they do Taylor's port flush on Friday. I am not really worried about the actual surgery. Goodness knows Taylor has had a lot of surgeries. I suppose I should post a list one day.

This VNS implant has caused problems since the unit was replaced in 2007. Now, this surgery is going to take 2 different surgeons and 2 separate incisions to complete. The ENT surgeon says that their biggest hurdle is moving the unit to another place on her chest without messing up the wires. His actual words were "wreck the unit". If they do that, then he will just clip the wires attached to the vagal nerve, remove the device, and close her up.

We will then see if she seizes even more than she does now. If she does, we get to go for our 5^th "VNS only" surgery and start all over again…this time, with the implant in the spot it should have been in 9 years ago. Okay, so I'm not as bitter as I seem. I realize that 9 years ago, Taylor was one of the first pediatric patients to have the device. It was also implanted by a neurosurgeon. He was only doing what he thought best.

Taylor has a very high pain tolerance. However, this surgery is one of her more painful ones. She recovered from the pain of brain surgery 10 times faster than did from the VNS surgeries. I'm sure the fact that they are cutting the same scar from the first surgery for the 3^rd time doesn't help.

Yes, even after dealing with a medically fragile child for 20 years, I still have "why" tantrums. I don't think that will ever go away. I think you just learn to adapt after so long and those moments come less and less. No matter what though, there will always be those kinds of days in the future…it just comes with the territory. Otherwise, I'd be in the padded party room with other moms/dads of special needs kids.