Questions about care/ a parents perspective

  At what point did you feel like your were on your child's "care team?"

We have a great pediatrician who valued my experience with the speciallists when I shared my reports with her.  It was clear she wasn't comparing what I said to the report she received from the doctor, but that I added dimension. Also, Quin's GI doctor was great in educating me, and then accepting my input when he was confident I understood his training. 

     I've got a number of experiences where my knowledge of Quin's Costello"-ness made a huge difference in his care. The older he was, the more confident I was that what I learned from experience was valid, but still, a professional could put doubt in my mind that would put a dent in Quin's quality of life.

When didn't you feel part of your child's care team?

• When a doector said, “find that quiet place in your heart” and I didn’t realize until years later that he meant that Quin was at great risk of “dropping dead” (as his colleague said to me one day when he wasn’t in the office). 
• When several doctor didn’t believe me when I voiced my concern about Quin’s pain management.
• When a doctor called Quin “turkey”- to be fair, he called all his patient “Turkey.” When a nurse chose to take my patient waiting at her station for “pressure, after moving from the ICU to the general floor and said, “Well, there’s a double lung transplant.” When a nurse said to me one early morning when Quin was in obvious pain, “Is it important, because I’d hate to wake up the doctor if it isn’t.”

•  When the doctor came in, didn’t introduce himself, didn’t wash his hands and went straight to Quin and put what looked like a paperclip in his eye, then proceeded to use a lns with a bright light source into Quin’s eye- and Quin, went ballistic, and we were so shocked we didn’t do anything. When the doctor didn’t believe my concerns about Quin’s pain management, and alspo when the same doctor  (cardiologist) discountinued Quin’s GI meds without telling me, and Quin had coffeegrounds coming out of his g-tube. When the same doctor discharged us from the hospital on a Saturday but didn’t gie us any help in getting a prescription for an unusual medication that needed to be compounded filled.

Looking back, how much progress have you made with the acceptance that your loved one is gone?

I remember making myself remember how badly Quin was doing, and how the doctors could no longer help, so that when the days came that I would bargain with the devil or whatever entity for Quin to be alive, no matter what condition he was in, I’d remember how I’d come to realize that it really was right for Quin to die. That feeling, the bargaining, came three years after Quin died. And I dredged those terrible memories.

What do you do now when the loss of your kid hits you?

 I savor it, because it brings him closer to me. I worry about my memories fading.

Support around Loss

 Talking to other families whose child died doesn’t necessarily help me cope, but talking to other families who are raising a child with Costello Syndrome, and also struggling with a medical system that doesn’t know much about the syndrome, gives me the most fulfillment that validates the value of Quin’s life.

What there a time during your child’s illness that you hit rock bottom? What helped you get on with life?

 In the PICU, after the Attending and his fellow dripped sweat from their brows onto my son trying to find his diastolic blood pressure, Quin made a slow come back. I folded origami cranes from everything available, mostly sponge wrappers and copier paper with lab results printed on them. I measured time in five minute increments.

 “How can nurses best help parents with grief?

 Be honest, acknowledge our grief but don’t dwell on it. Don’t be embarrassed if we cry-it’s to be expected. Be compassionate. Don’t be cloying. Be patient.

Is it okay for clinicians to share their beliefs?

I remember an RN who came to do a night shift at home. I confirmed verbally that she knew how to run the enteral pump, then went to bed. At 2 a.m. the pump alarm went off and didn’t stop. I got up and saw that the RN had spilled formula along the carpet from the hall to Quin’s room. After I put everything back together in working order (she also allowed the bag to run dry and didn’t know how to reprime it), she started to talk to me about the alternative medical training she was getting. She urged me repeatedly to contact her professork who, she said would give me two small packets, one which I should pin to the inside of Quin’s clothing, and another packet for my pocket. Then Quin would be cured.

 Metaphors are ok, like the one about caterpillars to butterflies, but learning about the professionals own beliefs indicates that they’re not taking my beliefs into consideration- they’re superimposing theirs on me and my family. Safest to ask what my beliefs are, then find common ground.

What was one thing that a health care provider did or said that left a lasting positive memory?

I’ve got a lot of examples of this as well. The one that pops up today is the meeting we had with one of the Attending Hem/Onc doctors after Quin died. He acknowledged that if we had done MRI’s we might have been able to see how aggressive the tumor was, which would have given the doctors the confidence they needed to be more aggressive. (I and a number of residents felt that MRIs would be appropriate and tried numerous times to get them done, but the lead Hem/ONC Attending refused to submit the request, and never said wy- except that CT scans provided a better imagae of the tumor for its location.)

A parents perspective on hastening death:

I never did find myself with that thought.  What I did do, though, was to work hard to remember the pain and suffering so that when I got to the point in my grieving where I would do ANYTHING to have my son back (I knew I’d get there, I was close to there before he died), I would be able to recall that death really was the right thing for Quin at that time. (I experienced that phase 3 years after Quin’s death.)
 
Quin’s tumor was unusual in that it killed by constriction.  It grew between the organs in his abdomen, and cut off blood flow to the organs.  Before he was actively dying, I asked about organ transplants, but the doctors said it wasn’t feasible – Quin would need too many organs.  A couple of years after Quin died, there was a small article in the newspaper about a boy who got something like a 6-organ transplant.  I cut the article out and carried it in my wallet until it fell apart, years later.  Had I fought hard enough for Quin?
 
About 5 years after Quin died, I was contacted by a doctor in the Philippines. She had identified a child with Costello syndrome who also had a tumor related to the syndrome, like my son, and had questions about the syndrome.  She’d contacted me, as the “medical information maven” on the syndrome, as I’m described on another parent’s website on the syndrome. I asked if I could communicate with the family, but the doctor said they didn’t want any contact.  They had taken their child home to die.  The news upset me very much, partly because I wondered if the child’s developmental delays might have contributed to their decision not to fight. I like to think I’m more open-minded now, but the lessons Quin taught me were to never give up.  He had survived several other near-death experiences, and the lessons we, his caregivers, learned were deep.  Quin defined grace –and even progress- under pressure, and I worked hard to meet and dignify it.  
 
In the DD community (developmentally delayed/disabled), hastening death is so repulsive that even today, Terri Schiavo is a hot topic.  I believe the definition of “dignity” from the perspective of their loved one w/DD is dramatically different, informed by a lifetime of struggling for dignity in everyday living in our society, which prefers to banish imperfections, including children like ours.  
 
Learning about AND (Allow Natural Death) has changed my perspective greatly, reminding me of the possibility of a natural course of events – but I could not live with the guilt of even considering the thought of hastening death.