Friday, February 18, 2011

The Good, the Bad, and the Just Plain UGLY

I've been putting this off because I have no words to adequately describe how I feel. Mason had his two appointments today, one with good news, and one with no news that only infuriated me. I'm only describing the first one, because I still can't talk about the second one.

Mason's Audiogram was done without a hitch, and it was determined that he had no change in hearing loss! This is very good news, that I really wanted to hear. The bad news is that the new chemo medicine he will start to have on Monday, is one of the medicines with a higher risk of hearing loss. I'm just glad there hasn't been any loss so far, though, and I am seriously hoping that won't change much after the rest of his treatments. Thinking positive!

And on to the second one; I know I said I wasn't going to talk about it, but I want to give you the gist of what went on: we went into the ENT specialist, who proceeded to perform the exact same procedure Mason received from the other specialist he went to last month. Exact. He put a scope down Mason's nose, saw what the other guy saw, only now the other vocal cord is looking weak as well. Then he gave us the shocking news:

There's nothing he will do for it. We have to wait for Mason's treatments to finish in December, and see if it changes. Meanwhile, we're supposed to try to urge to have his feeding tube removed because there's no use for it, and hope he doesn't choke when he eats. Oh, and he wants to do the scope-down-gagging-child's-throat thing every four weeks or so, just to check it. And he's going to need to swallow foods and liquids while said scope is down his throat, but it will be okay because the food will make it fun for him. Even though he gags. Even though he throws up. Even though he's clearly not comfortable with it at all. That's the plan.

I don't think so.

Since when did it become okay to just give a parent your decision on treatment for their child, and not explain your reasons? When did it become okay to come into the room with a preconceived notion and make a plan of care based on what's already written on a sheet of paper? Did he even listen to me when I told him that we've already been through ALL of this, even the already choking on liquids AND solids part?

We're back at square one, where all we do is wait and see if it gets worse. But you see, we already did that...back in November. And it did get worse, that very next month...and then even worse after that. That's where this whole fun little roundabout began.

I know this sounds like a terrible thing to argue about in a doctor's office, with a medical professional who has countless years of experience, but it happened. Those years of experience did not show today. There is no way that the ultimate solution to Mason's problem is to do nothing until December. And if that's really the only solution, I want to know WHY.

He couldn't tell us.

So without explanations, without laying out our options (and there were, we came to find out, other options), the Dr. was finished, and ready to leave. But there were still questions to be answered, and Latu brought them up...which had him stumbling for answers. When pressed further, he became defensive; wondering--I am sure--why we weren't nodding our heads and agreeing to anything and everything he said, like he obviously wanted us to. Because, folks, he didn't have any real answers for his decisions until much further into the conversation. It wasn't until he had dodged every question, and literally gave Mason's chances of death as a reason for no action, that he was finally able to give an answer that made sense.

At this point, I'm just calling this the confrontation from...well, it rhymes with Frell. I can't talk more about that bolded sentence...It will seriously make me cry. Latu describes it here, using much better words, if you want to read it.

In the end (about 15 minutes later) he did finally give us a reason that sort of made sense: It's not just Mason's vocal cords, it could be the nerve that sends the signal to his vocal cords to open and close. If that's the case, then doing any surgery on them to make them close, could cut off his airway completely. Okay, I understand that.

WHY DIDN'T HE SAY THAT TO BEGIN WITH??

He seriously could have saved us 15 minutes, and himself, a lot of respect. Did it take him that long to think of it, or was he just evading questions for the fun of it?

He also then gave us another reason: It could be the chemotherapy drug, and if it is, then it will get better after about six weeks of being off of it. That's clearly not the case, since it started getting worse in December BEFORE he started chemotherapy. But he made sure to call the Oncologist and have her stop Vincristine treatment for a few weeks to make sure.

So the treatment plan has changed now. We'll find out more about that on Monday.

This post is terrible, I know. I'm very frustrated right now and instead of talking about my feelings like a normal person, I blog. It gets it out better.


P.S.: Latu, you are a vicious debater. I still think you should be a lawyer. Thanks for coming today!!

P.P.S.: I'm really looking forward to good news at Mason's MRI tomorrow. I may also have before and after pics of his MRIs. Whatever happens, at least you can be sure I'll blog about it....

2 comments:

  1. I hear you! I agree! Kirsten has had a few doctors that lacked 'humility' and had an over abundance of 'arrogance'. It schools your feelings when you have to try to calm yourself and then with dignity and assertion make 'your' concerns and wishes know. I don't know why some professionals feel that we should kneel as their throne or arrogance and their so called superiority. 'With God all things are possible.' We may not understand His ways at the time but they prove to be correct and for our learning.
    Have you talked with other parents dealing with what Mason is dealing with? I don't know if there are others out there. Sometimes you end of being the pioneer for others. We have personally been through that with Kirsten on several of her medical treatments. Keep the faith. You are in our thoughts and prayers. You and Latu are doing an amazing job! Keep up the great work! Mason is blessed with a wonderful family! ♥

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  2. ah, i'm so sorry! it sounds like that doctor didn't care at all and wasn't really listening! i'm glad you were able to have someone there with you to help you fight - that makes such a difference to have support. i'm glad you guys stood up to him and tried to get answers. let me tell you what, it make me so CRAZY when doctors don't explain their reasonings, provide details, etc. i know that THEY know why they are or aren't doing things. but i NEED to know, too - as the parent. so that i can feel confident about what's going on, so i know what to expect and what to watch for and just so i can be an advocate for my child. WE are the ones who really know our kids and are with them 24/7. grrr! it makes me so mad. i'm sorry you had such a bad experience and are having to deal with all this on top of everything else (like cancer! :))

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