Really Nice Wolves with Sad Faces and Stethoscopes

Ok, I did say a time like this was coming. And is here now. A dark time. So please don't expect me to be that positive or that objective or anything. I need to vent.

Today was a fairly crappy day. It was crappy enough that it started to feel somewhat like the day we first got the news that Joel was terminally ill. It wasn't quite that bad, but bad enough it felt a bit like deja vu.

First of all, it held several nasty "surprises." Like when I came in to find Joel on nasal prongs again. No biggie though. So I asked the nurse how Joel's night was and of course, it wasn't great. He had a temp and had been breathing badly, hence the nasal prongs. They gave him steroids. But since then he was doing better, and remained fever free all day.

Then the ENT comes along. And starts talking about Joel's partial collapse lung. WHAT??? I didn't even know that Joel had x-rays!! It might have been nice to get the news a bit earlier, and not by an ENT (EARS, NOSE, and THROAT) doc who really is uncomfortable discussing lung stuff.

Then my husband can't make it to the meeting, so I am going to be by myself. Oh, not really by myself, cause all the medical staff will be there. But I am feeling a bit alone as I go. Still, I think, how bad can it be?? I know about Joel's possible floppy epiglottis and I know that things will be hard to resolve. I know that it is likely that Joel is going downhill. I know that the one plan we have is that they will send us home with a monitor for now and we can deal with the questions later when Joel has recovered from the virus. Really, what can go wrong?

And it started off pretty good. I was calm and reasonable. All the doctors were kind and trying to be helpful. No, it wasn't great, hearing about how Joel is likely getting worse, and all that sort of thing. But I am prepared for hearing most of this stuff, though it hurts. The bad news about the stats for surgery with children who have serious neurological problems. The mention of a trach. All that. I relax a bit. See? Why was I worried?

Then I find out my second really nasty surprise of the day. One of the doctors starts discussing how we should stop giving Joel steroids soon, as he had brittle bones and already had several fractions. SEVERAL??? Wait a minute?? So I correct the information, no, we SUSPECT he may have brittle bones as he has had ONE incident of a bruised bone.

Wrong. For the first time I hear that the DAMN x-ray has shown evidence of several fractures. Don't ask me for sure where or what sort, because by this time I am in a bit of a daze. I think we were talking about spinal fractures, at least, that makes some sense, but???

Blindsided with more bad news, and though I feel a mite foolish being unaware of the condition of my own sons bones (though NO ONE TOLD ME), my over riding emotion is that I just want to break down right there and cry because now my son had brittle bones and I am wondering things like: Was he ever in pain and I didn't know?? Is his spine now deformed?? Next time we dress him, am I in danger of breaking something else??

But the conversation moves on. To my last discovery. Turns out that I'm NOT getting an oxygen monitor at home. Something I had counted on. Something I had thought was actually already sort of a "sure thing." Not because I have assumed this. Because it was specifically stated to me...

And now, I am in a "discussion" about why a monitor is NOT a necessity, or even a good idea. Though to be honest, what I THOUGHT was going to be a discussion (which in my definition is a free exchange of ideas and information among 2 or more people) is actually feeling a bit more like an INTERVENTION.

Yeah. It truly feels like an intervention. Like the real purpose of the meeting was maybe more for a group of caring people to confront me with my addiction to optimism, hope, or unrealistic expectations, whichever way you want to say it. Like the real reason was not for them to work out a home care plan with me, but to tell me "Look, my dear, I know it is hard to accept, but your son is dying and there isn't much we can do, he's too far along, and any options we do offer, we really think are pretty crappy and you wouldn't want to go there anyway. We are trying to tell you as nicely and kindly as possible that you should just take your boy home and let him die in peace."

Look, I'm not saying that is what they WERE saying. I'm just saying how it SOUNDED.

And for a few minutes as I looked around I thought what I saw was a group of wolves wearing stethoscopes and sympathetic expressions as they slowly tore out my heart and devoured it. They were ever so sorry and they felt ever so badly about it all. If they had looked fierce I could have been angry and yelled and gave them a piece of my mind. But who can stand before such sorrowful wounding, before such regretful torture?

I felt so alone. So alone. Everyone was agreed (with the exception of one comment from someone who tried to help).

And they even made me feel bad about our partial DNR for Joel. Oh, they didn't intend to do that. But they really, truly made me feel crappy about it. Like they thought it was stupid and "half-assed," like we should make up our minds: Do you want us to try to save him or do you want us to let him go, in which case, Why do you want a monitor???

I felt so alone. I know that most of those men and women really don't have a clue what it is like. I know they think they are being kind. I know they WANT to be kind. And they are very good doctors. But I am the one who lives with Joel. I feel bad for them when they have to tell me stuff that isn't what I want to hear. I'm sure that is hard.

But sometimes I'm still a bit angry. After all, they get paid for this. There are a lot of different ways they can forget about Joel or make sure they don't have to deal with this sort of thing. I love Joel. When I take him home, no one pays me to care for him. There is no over time for me. If I walk away, not only is that questionable morally, but I would just be ripping my own heart out. I'll be the one to love him when he cries, or deal with a trach, or stay all night with my sick little boy. I'll love him, I'll bury him, and I will mourn him. I'm not saying that at night when they go home to their lives they don't feel badly. But it really is nothing like the same level of commitment, is it?

Whew. Done. That was quite a vent... Please don't think that I in any way feel that our doctors are not good doctors and good people. Steve and I have always been very happy to take Joel to Children's. We really feel it is a very good hospital.

But this blog is about honesty. And that is really how I felt today. Like a little sheep in a room of very nice wolves with sad faces and stethoscopes.