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Venting and an Apology

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Venting and an Apology

“No child turned away.” It was the third time the local radio personalities announced that slogan in the 10 or so minutes I had been tuned in. They were trying to raise money for the patient care fund at the local children’s hospital. That was clearly the slogan of the event. It irritated me a little more each time they said it. It was not a huge irritation at first, but enough I said something to Jason who was in the car with me. It grew as the day went on. Then I found myself still stewing about it a couple days later when we stopped by to drop something off for one of Max’s classmates who was/is recovering from surgery there.

At first I thought it might just be the mood I was in that day or week. I mean it’s just a slogan. Still I remember telling Jason that it made me want to scream at someone: “Really?! Is that the best thing you can say?!” Yes, it’s great you treat everyone! Yes it’s important! Yes it’s hard! It’s also federal law! If they worded it, “we follow all federal laws in operating our hospital” that wouldn’t be a great rallying cry. While it is an irritating slogan, I have found that if I want to yell at someone over something that silly, there is probably more going on.

I mean even my irritated-self was glad they were raising money, all of which goes to the patient care fund. Still the sloganeering combined with what seemed like glowing report after glowing report about other families experiences obviously was striking some wrong chord with me. For one, the stories just didn’t ring true with my family’s experience. For another, does no one else think that hospitals are horrible places? Yes necessary, but on the whole a lot of bad stuff goes on there just in the regular course of treating  illness. I think it was at that point I realized I may have transferred some of my emotion over our experiences at that hospital and others to the poor slogan writer for the radio-thon.

To be sure, I think some of my emotion is unavoidable. Those hospital stays where you have to watch your child suffer and know that there’s not much you can do to help are traumatic for parent and child. They stick with you. It’s been two years since Max had his last shunt revision (which is a fairly good run in the shunt world), but I can remember parts of it like it was yesterday. I have never in my life been more frustrated than I was after a conversation I had with a neurosurgery resident who at first wouldn’t show up and then wouldn’t listen. When he left the room without agreeing to or ordering the tests I knew Max needed, I broke down in tears. While we didn’t give up and did find another doctor at the hospital (a neurologist) who did order those exact tests which did reveal the problem which lead that very same resident and the attending neurosurgeon he worked with to operating, I will never forgot that feeling of coming up against a brick wall and not being able to move it and not being able to convey the sense of urgency I felt watching my child suffer. After it was all said and done we did talk to the resident’s bosses and were assured they would correct him, although I have a feeling they mostly told him to work on his parent-side manner and not to be so snide (instead of what I would have liked for them to tell him which was to stop and listen more and then he can be as snide as he wants). The whole experience shook my confidence in the system.

I also know the food allergies and asthma complicate any hospital stay not just when it comes to the food served but at times like when anesthesia is used. We have had some experiences at the hospital which I think are probably unusual and have left me feeling more leery than your average patient’s family. See Vigilance. It certainly adds to my feeling that we should never let our guard down while Max is a patient there.

Don’t get me wrong. I’m glad the hospital is there. I am grateful for the care Max especially has gotten. I will drive past other hospitals to take either child there even, or maybe especially, in an emergency, but I have decided to let myself off the hook a little. I don’t think feeling gratitude necessitates pretending it’s all good. While I realize now my response to the slogan was skewed, it’s possible there’s a lesson there for those marketing the hospital too. I think if families would share more of the details of their stay and explain what I see are still some real unmet needs, it’s possible more people would open their hearts and the fundraisers would actually do better than they do just trotting out patient success story after patient success story most of the ones of which I heard seemed to gloss over the painful details and come to what felt like  artificially happy “happy endings.”

Take something seemingly minor (at least compared to getting the care you think your child needs when they need it) like the room situation. A lot of hospitals have gone to having all private rooms. While I realize this can be cost prohibitive, it is something that can make a huge difference when you have to stay for more than a day or two. The time before last when Max was inpatient for a week the room sharing was a real issue with us. He had a headache and just wanted quiet. The kid in next bed over was watching wrestling with the volume turned up all the way. I talked to the other kid’s grandma and I understood he had waited all day to watch the wrestling. The pastor from his local church had driven two hours so they could watch it together. I don’t doubt that that experience was making his day much happier, but their enjoyment definitely added to my kid’s misery. While I actually appreciated how they prayed for him unsolicited from the next bed over before the pastor left for the night, I’m not sure everyone would have appreciated that. We hadn’t talked about religion at all at that point. They had no way of knowing I would feel that way. If the fund raisers would talk about issues like that or raise money for headphones either for the televisions or noise canceling ones for the sound-sensitive patients, that is something I think I could really get behind.

About the time I was venting about this, I also happened upon the U.S. News and World Report rankings for children’s hospitals. I was disappointed to see the local hospital’s name no where on the “best of” list. I know from our experience with the neurosurgeons that it is not that they can’t develop and attract good young doctors. It’s that they can’t keep them. My favorite neurosurgeon for Max moved across town to practice exclusively on adults where he no doubt makes more money and has better hours. I don’t expect a hospital in a town the size of Little Rock to be able to compete with the Mayo Clinic, but if they would target a specialty or even focus on retaining a single great doctor and discuss this difficulty, I know I could get behind that as well.

But I realize in hindsight those are minor issues. Really who am I to give them marketing advice? The slogan seemed to work well enough. They made plenty of money. The lesson for me here was that sometimes I just need to let myself vent. Dealing with chronic medical issues, even just the food allergies, is stressful. If you find yourself reacting unreasonably passionately to something really stupid, that’s probably a sign to slow down and look a little deeper. Hopefully you will do this before you find yourself driving down the highway yelling at the radio or (gulp) grousing on a sweet friend’s facebook page after all she did was post how she loved the hospital because they saved her child’s life. I’m sorry Meg!

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One response »

  1. I have also experienced moments of complete break downs…mostly from people’s lack of respect for the way we need to live our lives allergen free. I try to go to great care to limit cross-contamination with my boys’ food allergens and all I get is grief from outside sources. It wears you down sometimes to the point where I finally loose it on some unsuspecting person’s off remark. If only they could live in our shoes eh!

    Reply

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