After all…

I’m feeling a bit of rage coursing through me.

I’m afraid for the next person who says to me “I’m just a little concerned about his breathing.”. They may or may not end up with a broken nose.

Here’s the thing. I know you are concerned, but your statement implies that I am ignoring a serous problem; that I am not concerned.

Here’s what you should know. He was seen by 3 PICU doctors who did not offer any help or advice about this ‘breathing problem’ when he was hospitalized this summer. He was seen by his pediatrician, who was “concerned” and sent us to a pulmonologist. The pulmonologist was “concerned” but said it wasn’t her problem and sent us to an ENT. The ENT said there wasn’t a problem and put him on Nasonex. And then the problem continued to grow.

His nurse was “concerned”. The home-health nursing supervisor was “concerned” and curious about what we were ‘doing about it.’  The nurses that draw his weekly labs mentioned every single week that they were “concerned”. His three therapists were “concerned”

We tried to get back in to see the ENT earlier than planned and couldn’t. His geneticist tried to get us in earlier and couldn’t. His hematologist was “concerned” and wanted to admit us to the hospital so that we could get seen sooner. I didn’t want this so, we saw the pediatrician again, who was “Very Concerned” and sent us to the hospital, where he spent 4 days in the PICU. While there, he saw more ENTs and was scoped to get a clear picture of his sinuses and throat. He also saw several PICU doctors. They tried mixing helium and oxygen as well as various flow rates of oxygen. Nothing helped. The ENT once again said it wasn’t their problem. It’s neurological. The on call neuro agreed that we needed to have an MRI and see his neurologist.

Today we saw neurology. I’ll give you one chance to guess what she said.

Yep. She’s concerned about his breathing and wants to know when he’s going back to the ENT. She’s agreed to schedule an MRI but doesn’t think we’ll find anything helpful. After all, he does have a severe brain injury.

I mentioned his sudden loss of strength in his neck and legs. But… he does have a severe brain injury. Now, I’m no neurologist. Or doctor of any kind, for that matter. But, it just doesn’t seem right that an overnight loss of muscle control can be blamed on an old injury and that there is nothing to be done for him.

It’s a common problem when it comes to Matthew. Everything is “Well, he does have a brain injury.” or “We know what to do for kids with this problem who are older, but we have no idea what to do with a kid as young as Matthew.” (To which I would like to scream, “Then Google it!”)

Most people want to stop there, as if that excuse is enough. I won’t. I can’t.

I need a punching bag.

 

One thought on “After all…

  1. I was originally Googling a keyword or two for a Blog title and wound up here.
    I’ve had neurological and ENT problems going on, say, four years now, and they seemed to hit one after the other. I’ve been doing the “Doctor-Hop-Two-Step” for about three years, wasting time, money and peace of mind only to be told:
    “I don’t know what’s wrong. Get another test.”
    Unfortunately, I’m still wasting time and money, although I’m not as defeated as I was. I was born with some CNS problems and brain damage. I had a severe car accident twenty five years ago which, I think, is part of the problems I’m facing today, even though I didn’t technically have a concussion. These struggles have become obstacles in every sense: emotional, psychological, physical and social. I can only describe my lifelong obstacles, combined with my more recent problems: traumatizing.
    I feel so badly for you. And Matthew. I’ve grown tir d of the ‘Thy Will Be Done,” “I’ll Pray For You,” “God Will Not Give You More Than You Can Handle” dismissive speeches. I begged for the Creator to heal and restore me, more than once. At this point I’m trying to work on the simple goal of getting past my hurt, disappointment and anger instead of asking to be healed. After three plus years, I haven’t made any progress. At all.
    I just wanted you to know that someone out there probably feels the way you do.
    Matthew

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