*WARNING* ~ This entry is NOT well-thought-out. It is an unorganized mix of random thoughts, frustrations and exhausted spewing. Turn away now if you hope to find inspiration and sunshiny positivity. You've been warned.
If you're reading me here, you probably came by way of
Twitter . If that is, in fact, the case, you probably heard about my 13 year old son, and his newly diagnosed kidney disease.
He insisted I take a picture of his IV - it was his first ever, but, unfortunately, not his last.
Locally, the ordeal included one 5-day hospital stay, multiple mini-emergencies and a second trip to the Emergency Room.
Finally, after a week and a half, a
proper referral to
Children's Hospital of Philadelphia was made. <~~ BEST HOSPITAL ON THE PLANET!
Twice, we had been told we would be transferred by ambulance to CHOP because, to my
disbelief, there were no pediatric nephrologists on staff at our local hospital, and my son's condition was not improving. In fact, he was released, not transferred, after 5 days with little improvement, only to go back a day later, in worse shape than when he was first admitted.
I don't live in a rural area. I live 20-30 minutes away from Center City Philadelphia. The nearest
associated (i.e., chain hospital - same name/different location) hospital with a pediatric nephrologist had no available bed. We were offered a "regular" nephrologist instead. Since we had gone from zero to sixty in terms of intensity of the situation, an adult nephrologist was better than NO nephrologist, so we relented.
The story just gets longer and more disturbing from there - miscommunication, LACK of physician follow-up, inefficient Pediatric ER doctors and, worse yet, refusal to honor my RIGHT as the patient's parent to speak to the administrative officer I requested. Luckily,
his wife teaches in our local school district, and I got in touch with her through those channels. She relayed the entire story to her husband, the C.O.O., and immediately, everyone with a title wanted to speak with me. By this point, complaining, explaining, blaming was pointless. Apologies, after the fact, when one has a very sick child, are meaningless. My son needed action and intervention from moment ONE. Simply, we should have politely declined and gone directly to CHOP. After everything, I feel we are quite fortunate to have the ability to use the phrase "Live and Learn." Indeed, we have.
The experience of discovering that your child, previously thought to be in perfect health, currently has, and permanently will have, a lifelong kidney disease is shocking. Dealing with the fear, and coping with the sense of helplessness brought about by that fact, is only worsened by corporate/hospital politics and the almighty drive for a consumer rating of "Very Good." Perhaps, if they cared more about the patients and less about their regional ranking, provided the
necessary level of patient care and familial support, they would stand a chance. "X" Memorial Hospital will never receive that from ME.
So started my second round of single-motherhood - only 11 days in... That subject requires its own entry, I think...
The human soul longs for warm caresses, deep understanding and tender treading. It should be treated as if a priceless jewel.. to be treasured from whence it came, the weathering and pressurizing it withstood to become so strong and vibrant, never forgetting the delicacy of its nature.
