4.30.2007

Rated R for language. English, to be specific.

We had a horrible doctor's appointment this morning. The only good news is that he thinks Alicia is just fine.

Before seeing Dr. Bloom, a pediatric dermatologist, this morning, I had to sign multiple papers saying that I agreed to pay if insurance didn't. The papers also made it clear that if you are late, you may be unable to see the doctor that day. I received a reminder call asking me to come 20 minutes early to the appointment. Upon entering the office, there was another warning that if you did not have insurance (and that fact would be verified before you saw the doctor) you needed to pay in full before you could see the doctor. There was another sign in the waiting room that read "To help us stay on time, please limit your concerns and questions." What? That sign was also posted in the patient examination room. A man walked through the waiting room at 8:10. It was the same man, named Dr. Bloom, who walked in to examine Alicia at 8:40 for our 8am appointment. Sorry, but if you want to be so rude to your patients about their being on time, there's no grace left for you.

Before I met the guy, I was already thinking this is going to be a doctor who's more concerned with getting paid than with helping anyone. And I can probably forget about this guy having any time for patients' concerns. Josh offered that it was probably just the clinic and not the doctor, but this office is just the one doctor.

The last doctor that saw Alicia about these lumps immediately said, "We'll take out one to make sure we know what it is." And I thought he meant within the next week or two. He was sure the lumps were venous malformations. Just like he was sure that Alicia had a pilomatrixoma the first time he saw her. And his solution is surgery. But he changed his mind and passed me off to this brilliant asshole.

In the meantime, I went home and used my handy internet to discover that venous malformations can also occur inside the body and be undetectable without a scan, and I began to freak out.

Today. This bastard is sure that they are hemangiomas. Hemangiomas are all of those red birthmark-type spots Alicia has on the outside of her body. Since she has lots of them on the outside, his diagnosis sounds reasonable to me. But the ones on the outside have all been shrinking. The ones on the inside have not stopped growing. Why the difference? I don't have a clue. He didn't offer any explanation either.

Why, I asked, was he so sure that they were not venous malformations? Because venous malformations are present at birth. I first noticed the lump in Alicia's cheek in March of 2006, when Alicia was three months old. Just because I didn't notice the tiny lump in her big fat cheek for three months didn't mean it wasn't there when she was born. Also, when Alicia was three months old, she was really just reaching full term. He had nothing to say about that. Why should he? He was correct the first time he said it. What should it matter if a mother questions his conclusions?

I really want a scan done to determine whether there are any other lumps hiding in inconvenient places in her body, like her lungs or her brain. "No, I won't order a scan." Okay, fine. I'm not going to argue with this fucker. I'm out of here. I get up and start to dress Alicia. I can understand a doctor not ordering an expensive scan when he thinks it's not needed, but there's this other doctor that got me all freaked out about a different possible diagnosis that would have a small chance of some nasty implications and I'd really like to know which unsympathetic (and supremely confident) doctor is correct. It would just be nice not to be worrying myself sick about a worst-case scenario, however unlikely, any longer than I have to.

I say to Dr. Bloom, "How big are you going to let these things get before you'd do something?" Then he tells me that hemangiomas might grow for a while but eventually they always shrink and disappear all by themselves with no interventions whatsoever. (In contrast to venous malformations which never go away on their own and generally continue to grow until disciplined with a knife.) Why didn't he say that earlier? I do know that they shrink, because that's what I was told about Alicia's red ones. They should be gone by the time she's ten. But since appearing, the red external hemangiomas have never grown. It hadn't ever occurred to me that the lumps under her skin would be the same thing. And he still didn't answer my question.

One question I and others have had is why do they rule out cancer? I didn't ask it, but I had a thought about that today. All of these lumps under the skin are clearly along veins, and all of these lumps are blue in color. I suppose that could happen for cancer, but it so clearly looks like either hemangiomas or venous malformations that there isn't any reason to suspect cancer. Clearly I don't know enough about the body to know if there are yet other options, but since the Almighty Decisive Doctors can't agree, we'll just keep the options at two.

Now I don't expect doctors to be right all of the time. I don't much care if they are right half the time. I am so very aware that every body is different and complex. It does piss me off when they are so sure that they are right, even when another doctor has different conclusions. It does piss me off that today's doctor was unwilling to consider my comments. Not one of them seems to care that the mother is quite worried, even enough to just be kind.

Alicia is supposed to see Dr. Maynard in May. It's not scheduled yet, but I'll let you know. Dr. Maynard is Alicia's neonatal pulmonologist and I like him. I trust him. I know that he'll order a scan if I want one and I know that he'll tell me if he really thinks everything is just fine. I also think he wouldn't mind seeing if that damage in Alicia's lung has changed. He might even be able to look at the old CT scan and tell me that the pattern of damage (in the lung) is common for a babe who's been vented and wouldn't look like that if it was anything else in there. And I would believe him.

So there isn't going to be any quick answer on this. I'm going to have to live with that. These lumps aren't growing so fast that they are going to hurt Alicia either.

I feel for parents who have much more pressing concerns about their children, children with syndromes and life-long issues. It's exhausting to have so many doctors appointments, especially when some doctors are unkind. Today I left in tears. Lots of tears. You don't want to end up with the specialist who'd be happy to hack up your daughter in his free time just because you popped into his office. You also don't want the doctor who has no time for your concerns and is sure that there's no problem so let's not bother looking. But the bummer of life is that one of those doctors might have been right and the understanding doctor, with whom you have a good relationship, hasn't thought of the right thing. That's why Alicia has seen seven different doctors since leaving the hospital.

Josh once told me that he thought it was strange that Christians prayed for surgery. His dad is a surgeon. Surgery is a normal idea for Josh and, of course, his dad never makes mistakes. Right Ernie? But indeed doctors are human and the mothers are too. Pray that I'll have patience and peace. Pray that we'll see (or have seen) the right doctor who has the right idea and makes the right decision.

Thanks.

4 Comments:

At 2:16 PM, April 30, 2007, Blogger Josh Fuller said...

If I may clarify...

Some surgeries are routine and some are not. I don't recall the exact conversation, but I probably said something to the effect that I was surprised by how fervently people often pray when their loved ones undergo routine procedures, as opposed to say, before they get into their car to drive to work every morning. The risk of an undesirable outcome is probably lower, or about the same at worst.

 
At 10:48 PM, April 30, 2007, Anonymous Anonymous said...

I Googled for a website that would rate doctors. I found a rating for Dr Kenneth Bloom at http://ratemds.com/filecache/ doctor-ratings.jsp?did=6828&country=0
He really has consistently lousy ratings. Most comments mentioned how rude he was. Michelle, I hope you will add your rating and comment to the 10 out of 11 others who would never see this doctor again.

 
At 7:25 AM, May 01, 2007, Blogger Michelle Fuller said...

We get to see Dr Maynard this Friday at 8:30am. Yeah! I still imagine that these lumps will involve lots of wait and see, but it will be so nice to see Dr Maynard this week.

 
At 10:34 AM, May 01, 2007, Anonymous Anonymous said...

I'm sorry you're having such a frustrating time with the doctors! I hope you will get some answers (and comfort) soon.

 

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