So cliche, I know. But it fits. This whole cranio thing has been just one crazy emotional ride and I want off.
You may have seen on Facebook that we scheduled surgery with UCLA for August 25th. But now we are not so sure what we're going to do.
When I first figured out that Jesse had cranio, I found out about Dr. Cohen and Dr. Meltzer here in San Diego. I called and was told the next available appointment for Dr. Cohen, the craniofacial surgeon, was in November. I did some searching online and found his email address and sent him an email with photos of Jesse. He talked to his nurse and told her to get me in earlier, which was an appointment for July 20th.
On July 19th, I get a call saying something about Dr. Cohen leaving clinic early and that they had rescheduled me for July 27th at 2 p.m. Ok, fine... very frustrating, but it's only a week.
Then on Thursday, July 21st, I go to my appointment for the neurosurgeon, Dr. Meltzer. I sign in at the receptionist only to be told he couldn't see me because he had just been called in to an emergency surgery. I'm told I can see the nurse practitioner or come back tomorrow. I asked if she knew anything about cranio and got a very sarcastic, "yes". I guess I could have worded that better, but I just was wondering if she would really be able to do anything. But I figured what the heck, paid my co-pay and waited. And waited. And waited some more. Finally, about an hour later, I get called back. Only to be told that she really can't do anything and it would be better to see Dr. Meltzer. You have got to be freaking kidding me.
Now I understand that things come up and I definitely would not want to be the parents of the child that had to have emergency brain surgery, but it just makes me wonder if they just aren't way too over booked. They are the only team in San Diego that does this. What happens if we schedule surgery and something comes up then? Will they reschedule?
Most of the surgeons that I've been in contact with say that the optimal time for Jesse's surgery is 6-7 months. Only one out of four said later so I'll go with the majority. I just feel like I'm running out of time for him. I know there are rarely any true emergencies related to cranio, but if the optimal time-frame is at about 6 months, then that's what I want for him.
So I called and scheduled the surgery with UCLA and cancelled the appointments with Dr. Cohen and Dr. Meltzer. For Dr. Cohen, I had to leave a message about the cancellation. Then I thought about it and figured I should at least see Dr. Cohen, so I called back and left a message that I would like to see him after all. And then I kept trying to call because I wanted to confirm, but I kept getting voice mail.
Then Dr. Meltzer called Michael yesterday trying to get in touch with me. He was very apologetic about getting rescheduled. Michael just told him that my emotions are high right now and I've been rescheduled twice and that he needed to talk to me.
Well, today I decided to call Dr. Meltzer myself since I missed his calls yesterday. He wasn't available at the time I called, but the woman I talked to said she would have him call me ASAP.
And he did call and he talked to me for about 15 minutes. I told him about how I had to jump through hoops just to get an appointment before November and then I was rescheduled twice. He just said he wanted to reach out to me because he knows there have been many issues with scheduling. He completely understood why I was so frustrated and said he'd even try to come to my appointment with Dr. Cohen on Wednesday. Dr. Meltzer wasn't sure if he could make it because Wednesday is his surgery day, but he said that if at all possible that he would be there. He also said that he told his office that any time I call that I am to be high priority!
I explained to Dr. Meltzer how frustrating it was to have so many issues just getting in to see them because they are the only team in San Diego that can even do the surgery. He said he agreed with me 100% and that they really need to work on that because they should be serving the San Diego community and we shouldn't feel like we have to travel to get our family taken care of. Something to that extent. Anyway, I am just feeling a lot better about the team here in San Diego now. I hope I like the Dr. Cohen just as much. I know it will be sooooo much easier to stay local, but ultimately I just want what is best for Jesse.
I also told him I wasn't even sure if I had an appointment any more with Dr. Cohen because I had kind of freaked out yesterday and called and left a message to cancel, but then I called a bit later and left a message not to cancel. And now I can't get in touch with anyone to confirm whether or not I have the appointment. He told me that I was confirmed and he would contact whoever he needed to contact to make sure that it doesn't get cancelled.
I was quite amazed because all I've ever heard about Dr. Meltzer was that he didn't have a very good bedside manner and could come off as kind of a jerk, but that he was a very good surgeon. But he didn't seem like that at all to me. He was so personable and easy to talk to and I had a really good feeling about him after talking to him.
So after talking to Dr. Meltzer, I called his office and rescheduled an appointment with him for Thursday the 28th. It's the day after the appointment with Dr. Cohen, so if he's able to make it to that appointment then I can just cancel.
And I just got a call to confirm that I still have the appointment with Dr. Cohen. Wow, Dr. Meltzer works fast!
This has been really tough. Most days I'm just sad that Jesse has to go through this. Other days I go from angry to sad to terrified in 90 seconds flat. Emotions are running rampant. I'm just so thankful that Jesse has no idea and doesn't have to worry about any of this.
So tentative surgery date for Aug. 25, but that may change now depending on how we feel about Dr. Cohen after we meet with him.
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