Thursday, March 24, 2011

Twins Blog - Mar. 24, 2011 - "Trust"

 Ethan is just too cute and adorable at home. We can't wait for Aidan to finally join him. I think we've finally gotten the hang of caring for Ethan. Adding Aidan to the mix should be pretty seamless. It wouldn't be exactly doubling the workload. We'll just be doing everything twice.

Aidan is still experiencing the occasional apnea spells. Every time we go visit him, we ask the nurses how many apnea spells he's had in the last 24 hrs. These days it's usually between 3 and 5. So, we're still praying for his apneas to go away and stay away.

A  revelation hit us in our last hospital visit. A nurse pulled us aside and cryptically suggested that we make an appointment to see Aidan's attending doctor. The message came as a shocking surprise but at the same time, it was clearly evident: Aidan was not getting the medical treatment he deserves.

We had trusted our doctor and it was clear that this trust has been abused. Aidan has been off the vent and suffering from apneas for a month. There were no interventions during this time. About three weeks ago, we asked the doctor for his treatment plan. His response was basically "wait-and-see". It's a fact that apneas tend to just go away on their own, so we accepted this response at the time. We also suggested that perhaps it may be reflux but he brushed it aside saying that it was unlikely. Again, this was almost 3 weeks ago.

Just a few days ago, the nurses informed us that diuretic drugs were prescribed after the doctor personally witnessed one of Aidan's apnea episodes. We didn't think too much into this at the moment but now, it's clear that this was a reactive response and I have reason to believe that the prescription may not even be appropriate.

The next 24hours were truly hectic. We requested an emergency meeting with the attending doctor. Then we were told that the attending doctor was unavailable and that the on-call doctor would be able to see us. So, we agreed but demanded that a more senior doctor was present. We were told the senior doctor was unavailable. So, we decided to consult the hospital's social workers to see what action we can possibly take if we're unsatisfied with the doctor's medical treatment. But apparently, we contacted the wrong department and they subsequently led us to the hospital's public relations officer who handles complaints. We told them that we're not here to complain but we did express our frustration to them. We asked if we can request a different doctor or even move to a different hospital because we have reason to believe that our current doctor is incompetent. It didn't seem like we were able to accomplish much because they kept telling us that we need to meet with the doctor first. So we asked if they can send someone to join our meeting because we felt that a 3rd party needed to be present. They said no but suggested that we ask the head nurse of the NICU to join the meeting.
Shortly after, we received a phone call saying that the senior doctor has agreed to meet with us along with the on-call doctor. Clearly the public relations officer tipped them off which was to our advantage. We arrived for the meeting and asked the head nurse to join us. She agreed. The tables were now set. As Han Solo would say, "This is where the fun begins."

A couple of highlights from the long meeting:
  • The doc kept going on and on about Aidan's underdeveloped lungs. In less colorful language, my wife basically told him to shut up and stop blaming everything on his chronic lung disease. CLD is such a general condition that you can use it to explain everything.
  • I asked him what are they doing about his apnea. The doc insisted that it's not apnea and that it's a behavioral thing. I called his BS and told him that it is apnea because he's not breathing. That's the definition of apnea. Before his rebuttal, I told him, "Ok, you say it's behavioral. What are you doing about his behavior?"
    The doc said that they were monitoring Aidan's stats and adjusting his oxygen supplementation accordingly. He also said that Aidan's condition is fairly consistent with what similar preemies experience. This was complete crap and we need to look no further than Ethan's condition. I told him that means they're taking a wait-and-see approach and this was not acceptable at this stage. My wife asked them why they were not proactively trying to determine the cause of the problem and then specifically targeting the cause with the appropriate treatment.
  • I then asked "Shouldn't you be running all sorts of whatever-tests?"
     Perhaps trying to poke fun at my lack of medical terminology the doctor actually asked me "What whatever-tests?"
    I counter with "You're the doctor. You tell me!"
  • The next part is just fun. The doctor goes ahead and mentions several possible tests that they can conduct but seems to suggest that now was too early a stage to warrant them. We knew that was BS. We did our research and knew exactly what those tests were. After he was finished, we basically said something along the lines of: "Ok, all those tests you just mentioned? Do it."
  • Then it seems he was trying to buy some time by saying, "Ok, but I'll have to consult with this doctor and that doctor before I can run those tests."
    We responded with, "Ok, go set up those meetings. Consult them. Do whatever you have to. But do it now"
  • Towards the end of the meeting, I told him that I would like a another meeting a week from today to followup on everything discussed. His initial look and response was that of "Seriously, is that necessary?". But my and wife and I stared at him with dead serious eyes to let him know that the request was not a question. Game, set, and match.
It's just utterly ridiculous that we needed to push the doctors for treatment. I thought ethics were one of the first things that's taught in med school.

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