I wish I could do like Dorothy and click my red heels three times and go home. No such luck. Soon though. What would this part of the journey have been without one last hospitalization and struggle with the doctor here. Easy, that's what, but easy doesn't really seem to be our style now does it?
My stomach hurts from being so upset with the doctor here. It is just a mass of knots turning over and over. I want to be done with this hospital. When it comes to hospitals, you have the elite, the ok and the mediocre. It isn't a matter of trying to be mean, it is a simple fact that hospitals are not all created equal...and neither are doctors. And I can say that because I have spent a lot of time in three different hospitals in the past three and half years and have learned some things the hard way. The neuroblastoma family from Stapleton that I've mentioned would drive to Birmingham for treatment when they weren't in NYC just to avoid USACW. They would drive hundreds of miles from home and forgo convenience and being near their other child just to avoid USACW. What does that tell you?
It is such a waste to, because what kid wouldn't love to get their cancer treated with a beautiful park right outside as opposed to a concrete jungle?
Remember the test I was having trouble getting the doctors here to schedule? It was an MRI on his head. I think I told you that they kept giving me the excuse that they thought they needed to wait longer after chemo before doing any scans...Here's the thing... There was never any cancer in his head, so there will not be anything changing from that aspect. I'll have to ask Dr. Kushner (MSKCC) to be sure, but I suspect they just want a good MRI of his head for comparisons down the road. You see often times when neuroblastoma relapses, it can come back in the head. So the scan would be for then and now purposes later. Maybe I'm wrong on that, regardless, from what I know, the chemo is not affecting his head in any way so they're full of it with their excuses.
Here is what really torked me off though. The doctor here said that even though it isn't their standard protocol, they would let us go home Friday if the MSKCC doctors felt it was OK. But then when she e-mailed Dr. Kushner, she told him we were admitted for a fever and neutropenia. NOT TRUE. We were admitted because his stomach, bladder and nose were bleeding because of low platelets which turned out to be at 8! Clayton has not had a single fever since he has been in this hospital and the cultures that they did anyway, have all been negative...every day! I don't know how she can say that a child who has never had one fever throughout his entire admission was admitted for a fever. But she did, so Dr. Kushner advised we stay...because he thought Clayton came in with a fever...she misled him and so we are paying the price. If you are "admitted with a fever", then the initial exam upon admission should show a fever. Not the case with Clayton. Heres a glimpse of our heated phone conversation today:
A little ways in I said,
"There seems to be a problem with y'all not communicating accurately or efficiently."
She replied,
"No the problem is that you are trying to direct your sons care".
Hell yea I am! I am his mother it is my job. But I didn't say that, instead I replied,
"If it was your child wouldn't you keep a close eye on their care?"
She shot back,
"My child isn't the issue."
You don't say. Furious I just spat right back,
"No the issue is that you have no compassion, sympathy or clue what it is like to have a child with cancer."
She didn't like that and I didn't care. Still don't. The conversation went nowhere. She even went on to say that because of me talking to her everyday, that she has been emailing the doctors in NYC everyday. I laughed thinking they must have been talking about the weather, because I have only had two questions which means two emails. If she were a more capable doctor, neither email would have been necessary. Heres a recap of her "distortions" from our conversation today alone:
I asked to be direct admitted because of a fever and neutropenia...not true, I wanted to be direct admitted because his nose wouldn't stop bleeding and I knew he had low platelets. Not to mention blood in his urine and his vomit.
I had her emailing the NYC doctors everyday...not true, I've had two questions since Saturday and she didn't have to email them for either one.
I'm exhausted from cancer, I shouldn't have to be exhausted from dealing with a doctor being difficult. I fully realize that I can question my child's care (that's my job as his mother), but it doesn't instill much confidence when I the un-medically-educated parent seem to be more on top of things than the doctors here. That's a big part of why we went to NYC. I got tired of feeling like they weren't on top of it here. That isn't how it should be. We would come in on the day we were about to start a round of chemo and I would know which drugs he was about to get while the doctor would doubt me, go look it up and then come back and tell me I was right. That is not OK. The doctor should know what's going on. George can tell you how many times the doctors have come back to me over all this and said, "your right" after having just told me I wasn't. I got tired of how many different things they didn't seem to know from one visit to the next. George and I should not have to make the number of corrections that we have had to make with this hospital...can we say red flag.
Just another example, whenever we go into a medical environment, we always make sure everyone knows that Clayton is malignant hyperthermia susceptible (condition where certain anesthetics can be fatal) because George had a full blown reaction as a child. We tell them to red flag it across his chart. When we where doing his biopsy back in the beginning, we were down in the pre-op room talking with the anesthesiologist that was going to be in the OR and when we mentioned the MH, they had no idea. Fifteen minutes before surgery and they had no idea that certain anesthetics could cause my child to have a fatal allergic reaction. We had been telling everyone for two weeks and yet somehow it never reached this person who needed to know it the most- and didn't seem to be anywhere in his chart. They had to delay his biopsy to change everything out in the room to ensure there was no sign of any triggering agents.
It's ridiculous. It's exhausting. It's why I sometimes have to argue with doctors. I know that it may have seemed that I a problem in the PICU in NYC, but other than that one doctor, it wasn't because they weren't trying, they were, they were trying what they knew. My only disagreements with them were because while they know medicine I know my child and I can tell you when something isn't working very well with him. Its my job as a parent to know those things and stand up for my kid.
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