Tonight's picture was taken in July of 2009. Mattie was in the physical therapy clinic and working with Anna. Though it may seem like Mattie was actually walking, you should know that taking even a couple of steps for Mattie took a herculean effort of strength. Mattie couldn't straighten his right leg, it was constantly bent at the knee from pain and because both of his arms were operated on to remove bone tumors, this did not give him much upper body strength to help to support his lower body. Which was why trying to physically rehabilitate was close to impossible, not to mention his multiple set backs from chemotherapy. Yet despite the set backs, Anna kept Mattie motivated and always gave Peter and I accurate information and advice, which I truly valued and appreciated.
Quote of the day: The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden. ~ Johann Wolfgang von Goethe
Mattie's art therapist, Jenny, who I consider a friend of mine, sent me a NY Times article entitled, The New Child Abuse Panic. Within the article it talks about how a new radical charge filed by doctors and hospitals against parents has erupted and its title is "medical child abuse." Doctors and hospitals claim that such parents get unnecessary or
excessive treatment for their kids. Although most of these cases have nothing to do with real
child abuse, credulous child welfare officials have too often supported the
doctors, threatened parents with loss of custody, and even removed kids from
their homes, simply because the parents disagreed with the doctor’s plan of
care.
The article goes on to describe the warning signs of medical child abuse which are: “highly attentive parent” who is “unusually reluctant to
leave his/her child’s side”; a parent who “demands second and third opinions”;
a parent who “is not relieved or reassured when presented with negative test
results and resists having the child discharged from the hospital”; and a
parent who has “unusually detailed medical knowledge.”
Of course the problem with this whole label is that any parent who is caring for a child with a special need, a child with a rare medical issue, or a child with a life threatening illness such as cancer is naturally going to have all the qualities listed above. One thing the medical system trains parents to be is hyper-vigilant and assertive, because if you aren't your child will fall through the cracks and the coordination of care will also be questionable. Parents and caregivers serve invaluable roles and therefore one has to be attentive and when physically possible by the child's side. Seeking multiple opinions is also necessary and unfortunately in certain circumstances I would say that negative test results do not always mean much. It could mean that the wrong test was performed or more testing needs to be done, as was the case with Mattie. A parent's instincts and listening to insights of parents are crucial. Parents know the behaviors, temperaments, and overall nature of their children. When even the slightest thing is off, it will be a parent who can pin point it, and doctors need to listen to this and embrace parents as part of the treatment team for medicine to be truly effective.
I will give you an example which I think illustrates all of this, of course I have many in my Mattie memory databank. But I think this one truly captures the problem. I do think at times several health care professionals at the Hospital thought I spent TOO MUCH TIME with Mattie. I think they thought I fit most if not all of the descriptors of "medical child abuse." In one instance, I even had a PICU nurse separate me from Mattie, because she thought she knew what was in Mattie's best interest and she felt that it was me who was causing his tantrums and pain medicine seeking behavior. Thankfully this was resolved with the help of a reality lesson and the advocacy of our SUPER HEM/ONC nurse, Tricia, who educated this PICU nurse and a doctor on the loving relationship Mattie and I had with each other. The fact that I had to even endure this was ludicrous and it is amazing that under such intense stress, there was such an accusatory atmosphere Peter and I were living under. These are things I will never forget.
But that is not the example I wanted to share. The example I had in mind has to do with Mattie's condition a year into treatment. By that point, Mattie had finished all his surgeries and completed his chemotherapy. In all intensive purposes, we should have been working on rehabilitation of Mattie's limbs, since technically he was thought to have no evidence of disease. However, Mattie kept complaining of pain and he refused to eat or drink ANYTHING. Not a drop! When we confronted his doctors on this, the thinking at first was that it was a side effect of the chemo. As time wore on, then the thinking changed to the fact that Mattie was selecting not to eat or drink to purposefully be manipulative and to control the situation and me. As to say, he was developing an eating disorder. Keep in mind Mattie was seven! This honestly did not sit well with me, considering too that Mattie was also in intense pain. To placate me they tested him for ulcers, since they were sure that was the explanation for his not eating (which it clearly wasn't!!), then after a month of this nonsense, I couldn't take it any longer! I demanded that Mattie be scanned. The doctors did not want to scan Mattie, because they really believed six weeks off of chemo, Mattie couldn't possibly have cancer! Well guess what? Not only did he have cancer, he had cancer everywhere, which explained the pain!
The New Child Abuse Panic:
http://mobile.nytimes.com/2015/07/12/opinion/sunday/the-new-child-abuse-panic.html?referrer&_r=1
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