Wednesday, January 28, 2009

Post-Biopsy. Here we are.

It's been about ten days since I posted, which for me is a lengthy hiatus.

To update, Jordan's biopsy indicated he has no rejection. I'm happy about that. I didn't ask about the number (0,1, etc.) I don't focus on that much anymore. Unfortunately, they were unable to do a full biopsy of both his left and right ventricles due to technical difficulties. They made some adjustments to his medication - upping his Cyclosporine level, decreasing his Immuran level, and putting him back on Valgancyclovir because his EBV virus is high again.

Don't ask me to explain in detail what all of this means. Some transplant moms are good at explaining the medical stuff. They understand the complex formulas and the whys of certain drugs, the benefits, the costs, the long term risks. I've simplified it greatly for myself. It boils down to establishing the right dynamic in Jordan's complicated immune system between creating a healthy enough environment to provide some immunity verses an optimal sytem that will attack his transplanted heart. Some drugs help keep things in line. Some drugs he takes have long term consequences I would rather not think about.

Here's some more pictures. I always tell people to just post pictures when they have nothing to say. The truth is, I have a lot to say; it's just so depressing, I wonder why I bother writing about it? It's mostly for myself. I have to sort this out, because it's eating me up inside.

Proceed at your own risk after the pictures, I guess.

Long rant:

I was very unhappy after Jordan's biopsy on January 16. At the time, I was frustrated and angry and really wanting to hurt someone - it felt so bad. Since then, I'm still angry and frustrated and depressed.

To recap, Jordan was scheduled for a full annual - the examination of his left and right heart ventricles. Many of you reading this know what a day like this entails. From starving the kid for hours, to administering anti-nausea medication, to watching them put an anesthesia mask on him when they bring him into the cath lab - it's brutal. There's no way of explaining any of this to a kid Jordan's age. I can't explain to him why he has to go to a hospital, be poked and prodded for hours at a time by one doctor after another, be hooked up to monitors and machines that ring loudly every time he moves his wrist. I can't say or do anything to alleviate the anxiety I see in his face as we cross the bridge to go into the city.

No matter what I do or say, I can't make this pain go away. I will never be able to make this go away.

This is his life - and our life, forever.

So, on January 16, we went through our usual drill. We got there at 8:00, we checked him in, we waited for hours in the waiting area while one doctor or another came out to look at him. We weighed him, tried to calm him down, explained to him why he couldn't eat or drink anything. We brought him into the blood lab, got his blood drawn, while easing his screams. We brought him back to the lab and gave him anti-nausea medication that made him throw up, again. Because he had no food in his belly, he lay there dry-heaving repeatedly. He cried. I cried.

Eventually, they took him into the cath OR, while we followed. The anesthesiologist laughingly put the mask on him, and in a cheerful voice mocked the way Jordan's eyes began to drift asleep. His thrashing violently also ceased at the same time.

Jeff and I left.

After an hour or so, the cardiologist came rushing into the waiting room to tell us that they weren't able to do a full biopsy because "the computer wouldn't turn on." That's Jeff's recollection of the conversation. The doctor said they moved Jordan to another room and were going to do a partial biopsy, and that we could come back again another time to do the full thing. He ran out. This conversation took all of 30 seconds.

And then I began to process what he said. And that's when the anger began to build up.

That was a Friday. We had Jordan's birthday on Sunday. Later in the week, I called the Patient Relations Department to complain about what happened. Jeff contacted Jordan's cardiology team via email to let them know we were unhappy. I got an answering machine. Jeff got a two sentence response saying the computer malfunction occured while Jordan was having the procedure. Oh, and next time, he can have an angiogram too.

I got no response on my message.

This week, I got a charming form letter from the hospital with a survey seeking my input on how wonderful a job they are doing. I get this form letter every time Jordan goes in for a biopsy. The last time, I wrote a blistering letter explaining in detail everything that went wrong. I put in every single complaint I had, signed my name, gave them every phone number I have, and suggested they call me. No response.

I laughed out loud when I got the survey this week.

I also called the patient relations department again. I finally got in touch with a real person, who transferred me to another real person - who couldn't understand why I was upset.

"Computers malfunction." She said.

I reminded her that this was the second time a computer had malfunctioned while my son was under anesthesia in her hospital.

"But what are they supposed to do?" She countered.

It took a half hour of explaining to her that what happened was unacceptable. It is not ok to put a four year old under anesthesia and then decide whether your computer was working. The computer was working for the first patient they took in that morning. Was it not possible for them to check it again before they put Jordan under? What protocol did they have for ensuring against malfunctions, and what assurance would I have from them that this wouldn't happen again? And why is it ok to wait another six months to do a heart annual when they make it seem so critical that it be done every year? If it's ok to do it at 18 months, why are we wasting the money to do it at 12?

After this very long conversation, she indicated she would begin an investigation into the incident. She would speak to the doctors, the individuals responsible for monitoring the machines, and set up an interview with us to discuss the matter.

I guess I should feel happy I've said my peice, and that someone at this hospital knows how angry I am. I hope this meeting takes place and we can talk about everything that is wrong with the way they handle biopsies there. I wish I could feel reassured about this, but I suspect the hospital is so busy congratulating themselves for their high-ranking status in the trade papers, they don't really care about our little complaints.

Except, they seem to care every year or so when they come knocking on our door seeking pictures of Jordan to advertise in their annual stock reports and videos to play at the staff feel-good meetings. They march photographers into the house, flash camera at us, and expect us to say wonderful things about the place. They prompt us with the answers they want to hear. We repeat them. I bite my tongue. They came out again this year; and I grudgingly went along with it.

We do this because there are many people at this hospital who do deserve to feel good about their work. There are many people who care, who are brilliant doctors and nurses, social workers and administrators. These people have earned the right to work with pediatric patients because they speak with them, not at them. They look into little-kid eyes and get down on their level, and interact with kids like kids. They don't mock. They don't pretend the experience is a pleasant one. They are gentle. They are kind.

And then, there are cracks in the system. And it seems like every time we bring Jordan in for a biopsy, we fall into one of those cracks. Every time.

So, I haven't blogged in awhile, because - honestly - I'm depressed.

I can deal with this life. I'm grateful for having this life. I'm appreciative of being given a second chance with a son, who they told me would die. I'm not a praying kind of person generally, except every day when I thank God for giving us another chance. When I hear Jordan tell me he loves me, or when he holds my hand, or rubs his nose against mine - I feel like my own chorus of angels has burst into song. At that moment, I wish I could hug the whole world. But I can't, so I hug Jordan a little harder.

But I can't handle situations or people that make this life harder than it has to be. And honestly, sometimes it can be really hard. I try all the time to see the good things about a situation. I try to laugh, I try to find something positive. I really do try to stay upbeat, which is hard - because I'm a cynic by nature.

But this biopsy thing... don't these people understand? Don't they know what it is like for young kids, going into this big, scary hospital? There is nothing fun about this - why do they have to make it worse??? And why do they make it so hard for people to get answers? Why do they give me attitude on the phone when I complain? Why is the communication between us and Jordan's doctors limited to emails with nurse practitioners? Why can I never get a real doctor on the phone? Why do they have notes in Jordan's medical file about me?

Why, why why. Damn it.

We're facing a whole lifetime of whys with Jordan, and they don't make it any easier.

Sometimes, I think they just want me to shut up and be grateful because they saved Jordan's life. I don't think I lack gratitude. But, the thing is, I always think it was Breanna and Nikki who saved Jordan's life. I'm grateful for the large number of hospital staff who worked the technical magic that made it possible. Doctors, surgeons, nurses. They kept Jordan alive long enough to see the miracle unfold. They nursed him in PICU, under the ECMO machine, in the cardiac recovery floor. They walked us through a challenging first year.

But I can't focus on that exclusively when I see what he goes through today. It's not enough. This is the rest of his life I'm talking about here.
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