Whew. What a week. And it is only Wednesday. I have just been going back and forth between my Dad and my little Joel. I am trapped between two generations. I am simultaneously losing part of my past and part of my future.
I am hoping that God will still grant my father a few more years. If that does happen, I will know it was utterly God's mercy. We did have one encouragement today. Though my dad's white blood cell count has been no higher than 0.2 for almost three weeks, today he somehow managed to hit o.3. That isn't much considering where they need to go. But I was beginning to think they truly would never go up at all. So I am praying they will still go up tomorrow.
Today was another frustrating day at the hospital. And so I thought it would be the time to write another blog about what it is like to try and figure out the medical system. Here are some examples of the sorts of things that make you feel that you are trying to balance on a wall of Jello.
1. Here is one thing I know: Dexamethazone helps Joel breathe much better. Sound simple? Well, Dexamethazone reduces swelling, says respiralogy. So this means that Joel's problem is swelling, and CPAP will not help him. No, says ENT (and a few other docs), Dex can help Joel's breathing because it is the "Red Bull" of the medical world, it just pumps him up. Swelling is not really the problem. Respiralogy does not want to give me a CPAP. ENT does not want me to lobby for a risky tonsil removal. Apparently medicine is NOT an exact science. Do they sometimes "skew" the data to fit their ideas? I'd like to say no, but they are human, and I think they sincerely believe they don't. But this is just one example where the info "fits" the doctor's angle... whether or not they are conscious they do it.
2. Everyone agreed that Joel COULD have an MRI. It was not "unreasonable" to have one done on a yearly sort of basis to check the progress of his disease. It was NOT necessary (as in, it wouldn't affect his treatment), but there was no reason NOT to do it. So it was ok for him to get one, in order to give us, the parents, a tool to make our decisions.
So, the ward doctor agreed he could have one. And the metabolic doctor. And the neurologist. Yes, they all agreed. We'll make sure one is done.
And then no one ordered it. So 6 weeks later, I'm wondering where my letter is, telling me I'm in the line up somewhere...
3. So who do I call about this MRI?? Which doctor would have done it? And whose number is handy? Well, there is a general consensus among doctors that our Ped should be the general "manager" of all things medical. The hub, from which all spokes of the wheel can be gotten to. Unfortunetely, our Ped seems not to have gotten the memo. But I call him. And ask him if an MRI has been ordered. Because at this time I still naively think that this sort of info is sent to him in a memo, which he is aware of, or can easily access.
I know better now. No, the doc says. He has no idea. Why don't I just call MRI and ask them? Okaaaaaaay. I guess I can. So I do. Which is when they tell me what I already was pretty sure they would say: No, there is no MRI ordered.
So I can call my ped back and now I ask him if he could order one for me. To his credit, he does, at least, order it for me, instead of passing me on to my neurologist. Because I appreciate this, I try not to be too frustrated about how many times he has asked me to do my own "research" on Joel's medical stuff (like call another doctor re: doses on a med, or call the eye doctor to schedule eye surgery!).
Whoa! I was on such a roll there, I suddenly had story after story to share. But I think you get the idea. And I think I have been negative enough. It would be so easy, on a day like today, to be really negative about everything...
Because today was a discouraging day. And it wasn't all the doctor, though she might not have helped. So I don't want to leave you with a bitter taste in your mouth. For every bad story, I do have a good one.
So remember that the medical world is still filled with great people who do a wonderful job. In fact, I think you can see how even the great people can get caught up in this "system" and that is where it gets less than wonderful. After all, we are all only people, no matter what comes in front of, or after, our name.
And, somebody made my day yesterday or today. Some wonderful person came along and LEFT A BOX OF NICE KLEENEX! I don't know who it was! But may God bless you, and may you never be in hospital yourself with out a box of beautiful, soft tissue!!
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