It seems to be weighing heavily on my mind today, this disturbing thought I can’t seem to shake.
Now the feeling that comes with them is often mixed. There are some people that love doctors. There are some people so terrified by them it literally makes them sick. There are some people that love certain doctors but not all doctors. In the special needs community I think most of us fall into the latter category. There are certain doctors that we fall into step with, like we are on the same page all the time. Then there are other doctors that you are obligated to see to treat various conditions that you take with a grain of salt. Then there are others that you hope the followups are yearly so you only have to be subjected to their presence minimally because just thinking about them makes your blood boil. You dread that moment they call you back because you know you are going to leave in either tears or so mad you conjure up random acts of violence. Ok probably not the latter, oh wait, yes I have been there. Not serious acts of violence. Just running through the office’hospital causing mass chaos. I imagine knocking over a physical water cooler would be quite gratifying.
Today I heard a story from a mom who’s child is sick and they mentioned she was going into congestive heart failure like they were scheduling a follow up. Nothing to it, just routine business. But for that mom those words are earth shattering. And they had no intention on doing anything to treat or relieve the condition thinking that it would fix the problem. They treated the symptoms but not the cause.
Too often I feel that doctors have that almighty ‘God Complex’ you hear about so often in medical dramas. It’s made light of on television but for some of us special needs mamas its a very real thing. Doctors that stroll into the room, read a few pages of a very lengthy medical chart and for one reason or another have decided that your child is beyond repair.
We had a similar situation in a hospital admission. Superman went in to the ER for congestion, because of the congestion he was unable to eat by mouth. Every time he tried he would stop breathing. First time it was terrifying. Now we realize its his way of shutting down to fight whatever is going on. Or when he’s stressed. It sucks, and its inconvenient, but its just Superman.
The doctor was the attending on the Pediatric Intermediate Care floor, and has taken a few specialty course in nephrology. Now, while we have issues we see an actual nephrologist for, Superman’s main concerns were the congestion and making sure his Diabetes Insipidus was in check. Which means constant blood work to check electrolyte levels. After reviewing his chart for five seconds, he entered the room, looked him over and asked the standard questions: what is the problem today. I explained his sister had been sick and he had caught it and was congested (hello RSV season and school starting). Immediately he sat down in the chair by Superman’s bed and asked me what my intentions were for this visit. I said of course to walk out of here with a relatively healthy child or a viable treatment plan. I thought that was very informed and responsible of me. Apparently he had other views. He told me my son was crashing and when he did because of his extensive brain damage he could not justify giving him a bed in the PICU (Pediatric Intensive Care Unit) and he wanted a copy of our DNR which he asked for repeatedly. I quoted back his words and said so basically what your saying is my son’s life is not worth saving. The mom on the other side of the curtain in our shared room was MORTIFIED of what was happening (so I found out later). The doctor continued talking, as I dialed my husband to come back. Luckily my daughter was out with a friend of ours at the theater so my husband who had just left 20 minutes prior and had just got home had time to jump back in the car and fly back to the hospital.
Superman was discharged after many tests, EEGs, and even a swallow study. They placed an NG tube and it was gone 6 days later. Three days after discharge he returned to eating by mouth.
That’s the thing. 9 times out of 10 a mom can tell you when its serious and when its not. It’s a gut feeling. We KNOW our kids. We spend day in and day out caring for them, often without sleep. Special needs mamas are versed in medical procedure, often many of them able to do things nurses can’t do because its not a common thing they see. Versed in conditions, what they mean, exactly what is affected and the symptoms, complications and other information that could well put them on a path toward a medical degree.
I think too often you find doctors that are all too willing to say this is difficult or well he/she is just too far gone and I don’t know what can be done so I am not even going to try. I can spend 4 hours doing research to try to find something to help this child or I can spend my time seeing 8 other patients and making more money.
Disclaimer: I am aware that not all doctors are this way – refer to beginning. I have a few that are willing to push the envelope, listen to my concerns and ideas and go with it. SOME doctors are amazing. It’s the ones that have the God Complex that I have issues with. One’s that tell me that Superman’s life – the one he has spent day and night every moment of his life fighting for – that it isn’t worth saving because he won’t be typical – those are the ones I want to flick in the nose. And knock a water cooler on their toes.
Do you have a story of a situation that a doctor brushed off your child despite evidence that they would get better? Tell me in the comments.