Without a doubt the most difficult thing I have had to learn (besides Excel QM) is how to advocate for my child. I have never been one to really question medical opinion, after all I am not a doctor, but recent events have caused me to pause and think twice. Jeremy was recently hospitalized with pneumonia and the events that occurred during his hospitalization led to this letter, written by yours truly, to the Patient Advocate at the medical facility (I have removed identifying information):
I am writing in regards to a recent experience I had with my son in the Multi-Service Unit. On Thurs, 3 July I took my son to the ER because of a cough and high temperature. He was diagnosed with Acute Pneumonia (validated by chest X-rays) and sent home on 4ml of amoxicillin and a tylenol/ ibuprofen regimen to keep the fever down. On Sat., 5 July my son woke with a fever and was eating very little and not drinking. I checked his temperature within the hour and it had spiked at 102.3. At that time I brought my son back to the ER because of the fever and I was concerned that he was exhibiting signs of hypoxia. At the ER he was given fluids and a higher strength tylenol that immediately brought his fever down. During this visit the ER doctor and the pediatric on-call doctor decided that Jeremy needed to stay for a night to be observed and see if he still showed signs of oxygen deprivation.
The following events occurred:
1. I observed and heard nurses directing technicians in training to come to his room because this could possibly be their only time seeing a "Down syndrome baby", and this would be good training for them.
2. We were told on the first night he was staying because of low oxygen saturation levels. The second night we received the same story, and it had been added that he needed to stay because he was exhibiting signs of failure-to-thrive (he is underweight). The third night we were told he needed to be on oxygen therefore we needed to stay. The fourth day he was weaned off oxygen and then for no reason he was put back on oxygen for the night (he showed no signs of hypoxia or had low oxygen saturations), that night we were told we needed to stay because his heart rate was low.
3. During our stay I was told that I needed to coordinate with the nutritionist at the treatment facility to discuss the reasons why he was underweight. I informed the nurses and doctors that his failure-to-thrive condition was not a new problem and was being addressed by his PCM-team at his normal medical facility and they could contact them to verify. My requests went unheard, instead I was told this nutritionist was who I needed to deal with. I also asked the nurses and doctors to contact his pediatric cardiologist about his low heart rate, the request went unheard. It was not until they day we were discharged she was finally called and asked for her opinion.
4. I was told at one point that he might possibly have leukemia because he had dots on his belly.
First, my son is not an exhibit. He is not "the Down syndrome child." He is a child WITH Down syndrome. He is also NOT a "training opportunity." I cannot stress enough that my child is not some guinea pig for technicians to earn their badges on. He is a human being who has very human emotions. When he is being poked by everyone because everyone should get their chance to try and get an IV in him, he will hurt and he will cry.
Second, my son is underweight. When I describe to nurses and doctors that this is not a new condition and it is not something they will fix in 4-days I expect to be heard. When I offer his team at his normal facility as a second opinion, I expect that offer to be taken seriously and for his team to be called. I also expect to be given the respect as his mother that I may actually have a clue what has happened medically with my son over 14-months.
Third, I expect to be told EXACTLY why we are staying at the hospital for numerous nights. To simply give (what appears to me) to be a new reason everyday for further observation does not offer me a transparent view of his condition. I also expect every-single-last-person who touches him to know EXACTLY what is going on with him. During our stay there was not a single nurse, doctor, or tech who was on the same page or had the same story.
Fourth, I expect outrageous claims like leukemia to be founded by actual medical evidence. To simply say these dots mean leukemia is an absolutely crazy and irresponsible thing to do to parents or patients.
Lastly, and this occurred yesterday and is why I am submitting this letter, I was told at a follow-up with Pulmonary at that Jeremy had actually experienced a collapsed lung due to the pneumonia. During our entire stay this was never made known to me or my husband. We were told he had acute pneumonia, possibly leukemia, low weight gain, low saturations, and a low heart rate... but never this.
We were finally discharged because ONE nurse actually asked me what I felt about my baby and how he was doing. She actually listened and actually spoke to the doctor and explained my concerns and desires. During the 5-day stay she was the only nurse to do so. I am not sure what course of action you will take, but I do feel some training is needed that addresses continuity with patient care, listening to patient's parents etc. about patient's medical history, and understanding that not every situation is a training opportunity. At the very least some discretion in using phrases like that could be utilized.
What I have learned from this experience is that I cannot sit back and let medical take the wheel. Hopefully incidents like these will be few and far between! At the end of the day - do not be afraid to advocate for your child! You may just save another family undue stress in the process!