Monday, February 8, 2010

Listening To Your Intuition

I have learned, sometimes the hard way, that you should always trust your gut feeling. Anytime I have gone against it, I end up regretting it.

Right now, my gut is telling me NOT to go through with this surgery. My insides are screaming at me...."Don't do it, This isn't Right For Her".

So here is my internal struggle...Trust the doctors or trust my gut?

Because I was not at the appointment last week, I had some questions that I wanted to ask. And I wanted to talk to the doctor myself. I called today (Monday) and spoke with Dr. Bortz and after our conversation I am not comfortable with him or this procedure at all.

His tone of voice and attitude completely put me off. He actually seemed annoyed that I was asking questions that he had already explained to Jason last week. Sorry Mr. Smarty pants, I wasn't there that day and have never met you. I'd like to know more about the surgery you are supposed to perform on my 2 year old daughter and right now your attitude is not making me feel any better!

One of the biggest concerns is a huge snowstorm that is supposed to start Tuesday night and continue all the way through Wednesday night. 12-18 inches are forcasted for where we live and right now I'm not so sure we are going to be able to make it to the hospital at 6:30 am Wednesday. Seeing as though we live an hour an a half away from the hospital, I asked him what we should do if that happens. His answer was "You need to get a hotel room so you can be close by in order to make it on time. There are a few within 10 minutes of here and are probably not that expensive". Ummmm....ok. What do I do with my other 2 children? I certainly can't bring them with me, or leave them at the hotel. I suppose I could have them spend the night with their grandparents, but they have never had an overnight before so that presents it's own set of problems. I told him that even if we do get a hotel the night before, the storm isn't supposed to end until Wed night, so we might not be able to get home. "Well then you'll just have to stay at the hotel again a second night"...Gee thanks, easy for you to say - are you paying for it? Are you going to take care of our 2 older children? I didn't think so.

"Ok, so if we don't get a hotel the night before and can't make it Wednesday morning, what should we do then?".....In a very condescending tone..."Well that's a decision you need to make right now, because if you don't show up Wednesday morning, we will all be sitting around for an hour and a half doing nothing, and that's not appropriate." EXCUSE ME??? Oh I'm mean you won't be making any MONEY! Ahhhh....I see now....the health and safety of your patients aren't as important as your bank roll. Nice.

Aside from the discussion about the snowstorm, I was concerned about the "permanence" of these stitches. Why wasn't this going to be temporary? Any exactly HOW drastic will the change in her appearance be? Again...with a nasty tone in his voice...."Well you are her mother and you control how far I go with this, if you only want her to look a little different, then I will only put as few stitches in as possible. If you want her eye to heal and preserve her vision, then you need to let me do what I need to do". THANKS ASSHOLE, I feel so much better now.

As I got off the phone, I told him I would talk to my husband and let his office know what we decided about rescheduling the surgery on Wed because of the snow.

Now my gut is screaming "This is not the right doctor, This is not the right procedure for her, This is too drastic, too permanent...DON'T DO THIS". How am I supposed to ignore that???

The last time I went against my gut regarding Emily's eyes was when Dr. Kane wanted to take her off of the Iquix completely back in December. After healing from her surgery in November, he didn't feel she needed it anymore. I didn't like that idea since Dr. Zaidman had kept her on it at least once a day in each eye as a preventative of infection after her scratched right cornea back in October of 2008. My inner voice told me that she should still be on it at least once a day, but I trusted Dr. Kane and stopped giving it to her...3 weeks later she had a scratch on both corneas and a bacterial infection in her right eye.

The feeling I have is one of great I feeling this way because of how the doctor talked to me? Or was it because all of these things are adding up, creating a wall of doubt about this entire procedure? I was sick the day she was supposed to see Dr. Bortz, a huge snowstorm is forecast for the day of her surgery, the nagging feeling I had from day one that this was too drastic of a solution for her...Were the forces of nature putting up roadblocks?

I cried...a lot. I talked it over with numerous friends and family. Everyone agreed that if I didn't feel comfortable with this doctor or this surgery...don't do it. My last ditch effort to make some sense out of this was to call Dr. Kane and ask his opinion on it all. We spoke for about 20 minutes and after our conversation I felt better. Better in terms of how important it is for Emily to have this surgery, and better about the decision to postpone it and possibly get a second opinion. He agreed to send an email to Dr. Zaidman questioning the timing of things and how soon she really needed to have this done. He also told me that he has done this surgery before and by all means it is NOT permanent. The stitches can be undone at anytime, for any reason. If we don't like the way she looks after her cornea has healed...we can have the stitches taken out. I joked around, half serious though....asking if he could do the surgery. No such luck...oh well.

After speaking to him and talking with Jason, we agreed that going to the extreme measures to get this done on Wednesday wasn't worth it. If it didn't feel right and there was any question about how safe it would be for us to travel in the snow, or costly to pay for a just wasn't worth it.

After a very emotionally draining day, I felt better. I was going to be able to sleep tonight knowing that in the morning I was going to call and reschedule the surgery.

I was trusting my gut.

Tuesday, February 2, 2010

Appointment With Dr. Bortz

Tuesday 2/2/2010

Unfortunately I came down with the dreaded stomach flu and couldn't go to the appointment with Dr. Bortz. Today for the FIRST TIME EVER...Jason took Emily to the doctor by himself. We've either always gone together, or it was just me...never only him. I was just too sick to go, so what choice did he have? We could have cancelled the appointment, but decided not to. She needed to be seen and we needed answers. I just wish I had been there to ask the questions.

Not that I don't trust Jason, but I am always the one who deals with these things and know what kind of questions to ask, what kind of answers I need to hear. I didn't think to make a list for him, but even if I did he probably wouldn't have used it anyway.

When Jason called me after he left the office, surgery had already been scheduled for next Wednesday. Because I wasn't there I had to rely on him to relay the information from the appointment, which presents a problem. It was like playing fill in the blank because he doesn't retain information very well, so I'd ask a question and he'd have a hard time explaining or remembering what was said. Nothing personal against him, its just a guy thing I suppose, but frustrating none the less.

This is what I got out of it: At first Dr. Bortz really felt as though she might have some kind of muscular problem on that side of her face. He was watching her and didn't see her try to blink or close her eye at all. It was only after he put his hand in front of her face a few times (frightening her essentially) that she blinked and proved to him that she COULD blink on her own. Maybe it takes more effort for her to close that eye? I don't know, but after that he agreed that she needed the surgery, I found out later on that Dr. Zaidman was talking to him in the other room and Jason overheard him tell Dr. Bortz that this is what she needed. Was he pushing him to do this procedure????

He explained that her inner and outer eyelids will be separated and the top and bottom will be sewn together. A couple of stitches on the outer corner and possibly one or two on the inner corner. SHE WILL LOOK DRASTICALLY DIFFERENT. This is PERMANENT.

Wait...I thought this was supposed to be a temporary fix to help heal the scratch on her cornea! Not a permanent way to keep her eye halfway closed. If in the future (say 5 years from now) Dr. Kane or another doctor needs to go in and operate in that eye, the stitches can be undone at that time. But there could be some long term issues, such as eyelashes growing in the wrong direction. Well what about how she will LOOK? If her eyelid is sewn shut for 5 years I have to assume that it's not going to just spring back to normal without any difference in appearance! Yes, the point is to help her cornea heal so her vision can be maintained, but how she looks to the rest of the world will have a huge impact on her growing up. Right now she looks as normal as possible...after the surgery she will not.

I can feel the knot in my stomach forming already, it's like a dark cloud beginning to grow inside me. Everything about this surgery seems wrong.

Monday, February 1, 2010

Just As Expected

2/1/2010 - Appointment With Dr. Zaidman

No surprise here...Emily needs eyelid surgery. Dr. Zaidman had no hesitation about what our next step should be. After once again her left eye lit up bright green, indicating that the cornea was still scratched and not healing, he immediately told the Resident who was observing that the next step in treating this would be to do the eyelid surgery. My heart sank...I knew it was coming, but that didn't make it any easier to hear. He briefly explained about the procedure and told me that he wanted me to bring Emily back in the next day to see Dr. Bortz, another doctor who worked with him who would perform the surgery.

It wasn't a guarantee, just what he suggested she needed. He told me it was completely up to Dr. Bortz and how he felt we should proceed. He went as far as saying that the "scratch" wasn't really a scratch, but more like some form of a corneal ulcer (yet he said ulcer wasn't really the right word either). He thinks that the dryness in her eye that is caused by her (supposedly) not closing her eye all the way at night or blinking often enough, it what caused this scratch, ulcer or whatever it is to happen and not allow it to heal.

The theory is this: Because of the glaucoma, her left eye is larger than normal and doesn't allow her eyelid to close all the way or blink normally. If a few stitches are put into the corner of her eyelid, making the opening of her eye smaller and enabling her to close her eye more easily and more frequent, the dry eye will go away and allow the (whatever it is) to heal.

I'm really not liking the sound of this surgery, and who knows how long she will need to have the stitches in. Isn't this a little drastic?

I guess the appointment with Dr. Bortz tomorrow will give us some more answers.

For now, Dr. Zaidman told me to stop using the Tobrex ointment that we had been using to treat the scratches in both eyes. Maybe he felt it wasn't doing anything? I don't know...but instead of that, we will now be using the Systane Dry Eye ointment every 3-4 hours...until Dr. Bortz decides what to do.