Taking a moment to vent here, this is not from Oceana's perspective for the moment, it is 100% from me, Dad. This is, in my opinion, important enough to be addressed.
For whatever reason, the oncology floor at CHOP (3 South) has been short staffed recently. Typically, it appears that when this happens, they bring nurses from other floors. Since Oceana is an AML patient, we spend a lot of time inpatient and therefore we know most of the nurses. In fact, out of the last 4.5 months, we have only been home about 25 days. Anyway, this brings me to my point.
Oceana and I awoke Sunday morning to an unfamiliar person accessing her central line. We had never seen this nurse before and it was evident that she did not know what she was doing. Later that same night, Oceana started to have a high fever. The night shift nurse, different then the unfamiliar one, drew blood cultures. We learned later that morning that Oceana has a gram-positive cocci bacteria growth in her blood and has been extremely ill from it. Thankfully, the hospital staff immediately administered anti-biotic upon fevering for just this reason. Sadly, the hospital designated a nurse to a neutropenic child that was inexperienced with AML protocol and therefore caused the infection to begin with. So sad to watch Oceana suffer through this process, let alone by adding more problems. I only hope that this does not develop into something more serious and that the anti-biotic works. Would somebody please shout "Hello" to the staff, who in their right mind assigns an inexperienced nurse to a neutropenic AML patient! I am very upset by this. After all, is not CHOP supposed to be number one? Perhaps a lesson in humility would do this hospital well. Please understand that I am grateful that the hospital may cure my daughter, but extremely upset that they have made such a pathetic decision regarding her care. Apparently, according to the Dr and nurse practitioner, at least one infection is to be expected during an AML patients stay. Guess what, that's one too many!
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Dear Dave,
ReplyDeleteI am so sorry to hear what you report. And I'm angry along with you. The "mistake" seems incomprehensible given the precarious state of Oceana's condition. You have every right to be angry and to voice your concern to those in charge. And to us! We don't mind listening-in fact, how else can we even begin to imagine what you are all going through.
Summer months may be even more erratic given that vacations will begin...that's no consolation but just the reality and a call for further vigilance.
I hope that at some "good" minutes, Oceana has unpacked her package and begun some room decorating. At least some sparkly nail polish and big purple shades. Hope she likes the stuff.
Take care!! Much love and continued prayers.
Tobie
Dave,
ReplyDeleteAll hospitals have their issues. Its the long-term patients which learn what they are. Our first hospital, closed its pediatric department which moved us to childrens in Detroit. We couldn't get out of there fast enough. Things were better at U of Mi, but that is not saying much. The most important caregivers for Oceana are you and Patricia. The Doctors and nurses have many patients. You have only one, which sometimes makes you the expert.
Grant
Dear Dave,
ReplyDeleteHope Oceana has improved-infection, fever, etc. Please let us know.
Thanks
Tobie