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| Who decides who lives and dies? |
Can a simple heating pad be considered a heroic measure?
If we as parents don't look after our medically fragile kids, I can guarantee you that generally speaking, the doctors and hospitals won't! I understand that there are always exceptions but so far here in Indiana this has been 100% true. When we lived in Atlanta, a vast majority of the doctors and nurses at Scottish Rite were constantly advocating for what was best for our kids. But not here. To tell you the truth, it is absolutely pathetic. One of the main reasons we decided to move back home from Atlanta was because Deaconess hospital opened up a new hospital on the east side of town with a partnership with Riley's Children's Hospital. When we called ahead they assured us that they could take care of our kids. They can surely take care of routine things, but for complicated things like what Rickelle is going through now, they are really quick to want to transport her all the way up to Indianapolis! That's four hours away! And from our experience so far, over the last two years, the doctors up there aren't any better.
Come on! Give me a break, are there no real doctors in Evansville that are willing to treat a sick little girl and not pass the buck in exchange for the easy cases? We are still looking.
This week our daughter Rickelle has been in the hospital. She was not breathing well and her heart rate has been low. The emergency room did x-rays and initially diagnosed her with congenital heart failure. Of course they admitted her to try and get the fluid buildup out of her lung cavity. Now the diagnosis has changed from heart failure to "we still don't know." Our pediatrician did not want to put her in ICU but the regular hospital floor did not want her. Evidently they have just hired a bunch of "fresh" nurses and are afraid that Rickelle will be too complicated for them. So right now she is in ICU, but not under the care of the ICU doctor. She in still under the care of our Pediatrician.
Today we are firing our pediatrician because she has refused to communicate with us about Rickelle's care. I am picking up a copy of her records and taking them to yet another pediatrician. Hopefully this one will care. If she does, I'll tell you who she is.
Meanwhile, Rickelle is in the ICU, under the care of a doctor who doesn’t return phone calls, with a heart rate of 40, a body temp of 93 degrees. Last night the nurse was asked why her body temp was still only 93 degrees. She said that they have put warm blankets on her. We keep a heating pad on her most of time at home, but they won't go that far. Her heart rate is low and they said that the doctor is not concerned and has not ordered the nurses to do anything. Her blood pressure is 120 over 80. This sounds really good but Rickelle is not a normal kid and her blood pressure usually runs at 80 over 40. She was in Riley's last spring with heart trouble. The cardiologist ran all kinds of tests and said that her problem is neurological. The neurologist suspected hydrocephaly but refused to measure the pressure. Instead, he called in an ophthalmologist to look at the eye nerve bundles to see if they sow any signs of hydrocephaly. This might work with normal kids but Rickelle has birth defects and suffered a massive head injury after birth. Her optical nerves have never looked normal. So of course, the ophthalmologist said that his test was inconclusive. So why not go ahead and take a pressure reading if for no other reason than to create a benchmark to compare to later in case she continues to have more problems.
Here we are still having problems and no one with stones enough to act. As a matter of fact, last spring the neurologist said that to install a shunt at this point in Rickelles life would be a "heroic measure" and that he did not recommend that it be done. Of course Angie plowed into him and asked him plainly why he is working as a pediatric neurologist for a children's hospital if that is what he really thinks about the care he gives his patients. The nurse patted her on the back and told her that the doctor needed to hear it.
We were told that her tracheotomy would be a heroic measure but it improved her quality of life immeasurably.
Meanwhile, my little girl, who can't even protect her own airway, is lying in a hospital bed, cold, and with a low heart rate and with no doctor willing to step up and get to the bottom of it. Is giving her a heating pad to keep her warm a heroic measure?
Who decides who lives and dies? Why not give Rickelle a shunt if her brain pressure is up and give her a more normal life while she is here? At least as normal as it can be. The last I checked, it was up to the patient and the parents who lives and who dies. If caring for my little girl is a heroic act then you better step up and be a hero!
I can tell you this for sure. If my little girl dies because this hospital or doctor or whoever refuses to give her the care she needs, regardless of their opinion of what a heroic measure is, I am going to be very angry. And the only thing that they understand is money, so I am going to sue the doctor's and the hospital for negligence and wrongful death.
Rickelle still smiles at me when I walk into her field of view. When Rickelle's health fades to the point to where her quality of life is in question, then Angie and I will issue a DNR. Until then she needs a hero.
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