Wednesday, November 19, 2008

Parenthood III

Click here to read part 1 and part 2.

Parenthood Continued

An ambulance waited for us we we landed at Luv Field in Dallas. Darkness had set in and the weather was just as miserable only it wasn't quite cold enough for the moisture leaking from the sky to be ice. In a cold drizzle, I watched them move my son from the plane to the waiting ambulance.

There wasn't enough room in the back for me so I rode shotgun with the driver as we made our way across Dallas's rain slick streets.

Only a few minutes later we pulled up and unloaded beneath a dripping canopy. I was not prepared for the scene once we got inside.

My son was wheeled into a small room. One of Children's Hospital's neo-natal ICU's. For the first time that day I counted my blessings. All of the babies in that room were hooked to machines. Most were tiny, underdeveloped preemies. The few that looked older had obvious maladies. My son was by far the biggest infant in the room and despite the diagnosis, looked robust and healthy.

Gathered around most of the cribs was one or two haggard looking parents. I'm sure I looked no better to them, but at that moment I selfishly thanked God that my situation was better than theirs. I watched while the staff hooked my son up to various monitors and a new IV. All looked good and stable and I relaxed the tiniest of bits knowing that nothing too crazy was going on.

I was instructed to leave the room and go fill out registration papers. As I signed my name to what seemed like a thousand sheets of paper my wife and her sister arrived . I could tell Jennifer was hurting, but she wanted to see our son so I quickly finished and asked the receptionist to let us go back.

She called back to the nurses desk to make certain it was okay. It wasn't. according to the ICU nurse our son was in the throes of another seizure. They wouldn't let us back to see him, so we sat in the waiting area and held our breath staring anxiously at the door to the back.

A solid half hour passed by. Other parents went in and out. At that point we didn't know any of them well enough to ask what they'd seen or overheard. That would change in the coming days as we all became spy like. Anytime the nurses or doctors were examining or talking about your child you were not allowed back, but as I said the room was small maybe 12 by 24 so things were easily overheard. Over time we parents bonded, and at times it felt like us against them with the doctors and nurses being them, an odd feeling given the fact we were depending on this same individuals to safe guard the life of our precious babies.

A nurse finally came and got us. She explained that they were administering medicine when all of a sudden our son began to twitch and jerk involuntarily. As the nurse talked a very dim light flickered in my brain. The nurse said "It was almost like an allergic reaction to the medicine, but the medication we used is very common and according to his chart it was the same thing they administered in Amarillo."

But before I could digest the information and come to a conclusion the nurse pointed to our son and exclaimed, "Look he has Harlequin Phenomenon!"

My heart sank. All we needed was one more problem to go along with the defective aorta and the seizures.

Jennifer and I looked at our son. Straight down the middle of his face there was a line. On one side his face was flushed and bright red. The other side was pale white. I guess our faces where lined with worry because the nurse quickly explained that Harlequin Phenomenon is rare but nothing to get concerned about. There is also a horrible skin disease that bears the name of harlequin but here is a brief medical description of the condition my son had.

Harlequin phenomenon is a striking reddening of one side of the body and blanching of the other half with a sharp line of demarcation in between.

Each episode may last from seconds to minutes occasionally longer and the episodes may recur. Such episodes occur most often during the first few days of life. They are thought to be a vascular manifestation of the changes that are occurring in the autonomic system in the newborn.

This event occurred a few times in the coming days and then stopped all together. What didn't stop in the coming days was the uncertainty.

The first doctor we had knew and trusted the the pediatric cardiologist from Amarillo, but she went out of town after that first night. The second doctor expressed serious doubts that our son had coarctation because he said it was too difficult to diagnose through the tests the doctors in Amarillo had done. His primary concern was the seizures so he brought in a neurologist who began testing our son's brain. Meanwhile our son continued to demonstrate all the classic symptoms of a coarctation yet that idiot second doctor refused to acknowledge that the rubes from Amarillo might have called it right. My words not the doctors, but our meanings are the same. Yeah, I'm still a bit bitter of this time frame.

My most vivid memories of these days are the people that surrounded us. not our family who were there to provide support but the strangers that we were suddenly tossed in together with. There were parents who cared and hurt every second for their child, there were babies there that the parents never showed up to check on, there were parents who were angry, delusional, and parents that seemed annoyed that their child had inconvenienced their life by entering this world less than perfect.

I spent much of my time angry and fighting the urge to confront some of these fools but knew it would do no good. Sadly, several babies that shared a room with my son that first few days did not make it. Some from the caring loving parents and some from the other side of the spectrum. It was just as heartbreaking either way.

And sobering. To this day I feel as though I aged ten years with each death and I grieve for those parents.

Since doctor #2 decided my son's most serious problem was not his heart we were moved on the fifth or sixth day up to a regular room where the staff would continue neurological testing. For the first time I wandered around the hospital. Troy Aikman had sponsored a wing on the oncology floor. A ton of athletes had donated memorabilia and when i needed a break I often strolled up their to check things out. Along the way I stopped and talked to older kids punching around IV's and again I counted my blessings as I met these kids who were battling the cancer demon. Very few had hair but surprisingly most had bright smiles.

Jennifer was hurting far more than she'd admit even know so each night I insisted she go back to the motel with her family while I stayed and slept in our son's room.

This post is really discombobulated, but I am simply typing things as I remember. And during this time period I felt discombobulated, so it's only fitting I write it that way.

One such remembrance is of the milking room. Okay, so it's real name was the lactation room. Jennifer wanted to breast feed but of course our son was in no condition to nurse, so every few hours she would go in this room and use a machine to pump her milk. This milk was then frozen and stored for later use. I often sat with her while she endured this torture and often times this was the only alone time we had.

Life when on like this for a week or so. Tests all day, restless sporadic sleep for me all night. Our son's room overlooked the helicopter landing pad and the noise from that along with the fact they buffed the hall floors every night and the frequent visits from the nurse, and the waking up to warm the previously stored breast milk so I could bottle feed my son all left me very tired. I spent much of my time in a daze and my emotions were as scrambled as the previous sentence.

Back dropping all of that my grandfather continued to worsen. We also received news that Bart, the bloodhound Jennifer had owned when we married had finally succumbed to emphysema. That news would have hit her hard had we not already been on emotional overload.

This routine went on for days and then the neurologist scheduled a test which my son would have to be sedated for. Jennifer and I went to the lab with him. They administered the sedative and ... he had a seizure.

The medicine they'd given him was called Versed, the same thing they'd used in Amarillo and upon our arrival in Dallas. Three doses, three seizures. He'd had a grand total of 0 seizures any other time but guess what the neurologist refused to admit that their was a correlation. She claimed Versed never caused that kind of reaction and her recommendation was we put our son on some kind of serious seizure medication.

I asked for information on the medicine and a nurse brought me some literature. i do not recall the name of the stuff but the side affects scared me to death. And if he started taking it he would be on it for years as it caused problems to simply stop taking it. Jennifer and I discussed things over and decided not to put him on the medicine.

That very afternoon, the neurologist came into my son's room with a group of students in tow. When I told her we'd decided against the medicine, she very angrily told me, "I was putting my son's life in danger."

I asked her if any of the tests they'd ran on him had came back abnormal.

She said no.

I asked her if he'd ever had a seizure except when he'd been given Versed.

She said not that she was aware of.

I asked her if she could prove to me without a doubt that the versed was not the cause of his seizures.

She said nothing is impossible, but that she found that very unlikely.

So then I asked her if the roles were reversed and it was her child would she put him on such a serious medication without any real proof he needed it.

And she said the proof is my word. I am a doctor and you are not.

And I told her to get out because I needed more.

On her way out the neurologist said I was being naive and that she only hoped it wouldn't be too late before I came to my senses. To this day I've never been madder than I was then but guess what. My son has never had Versed again and he has yet to have another seizure.

A nurse that witnessed the entire thing said I'd done the right thing and that the neurologist was simply ticked off because I'd challenged her authority in front of students.

I never saw the neurologist again as the very next day our original doctors came back. She was quite put off that no one had done anything to correct my son's aorta.

And just like that the scariness of heart surgery, loomed back over us.

To Be Continued ...

Sorry, but this story seems to grow as I remember it. Maybe I can finish next time, or at least have a little more focus to my rambling remembrances.

The Conclusion of this story can be read here.


Tenakim said...

this is all very enthralling and well told! Mine was concise and not nearly as serious.

Cloudia said...

ah Doctors:
Always right
especially when the are WRONG!
And they overlook simple things too.
No wonder you are so soulful, Travis. you have been through hell...Warm Aloha to you!

Angie Ledbetter said...

Dealing with many doctors this year since my mom was diagnosed with a brain tumor, I can tell you the God complex runs rampant in some of them. Thankfully, there are still some who do not think they know it ALL. I feel your pain, and my pits are sweating for you. Hope we get relief in the next installment! :)

Chris Eldin said...

Travis, this is heart wrenching. I'm glad you had enough strength to think through what was happening, and to stand up to the doctor. That must have been very, very hard.

Poetry Sue said...

Good Job being an informed parent! And for paying attention to your son and listenting to your instincts...

Jess said...

The feelings might be raw, but your writing is far from discombobulated, my friend.
It hurts to read. I still remember the names of the other 3 babies in my daughters NICU room. I remember 2 of their parents. The other baby? Her Mom & Dad never once came to see her. I used to stroke her hair when the nurse left the room. I still have no idea what became of her.
The being thrown in with strangers part struck a chord, to say the least. I remember the feeling of "us" verses "them". And to be honest, I'm really crying now because until I read what you wrote I had forgotten and never discussed it with anyone else in my life- because admitting that the doctors are not always the "good guys" is something people don't readily understand.
And the pumping room. Oh, God, the pumping room. So many people have asked me why I never pumped with my other children. If you can AVOID pumping- you do at any cost, because pumping day after day after day in a hospital... well, I know you both know how much "fun" that is.
Can't say anything else. Too hard. But I ditto Merry. This is definitley something to publish- if only because you brought out feelings in me that I had long wanted to forget, and it's something all parents who are in NICU hell can identify with. Survivors need stories, and you are a fantastic voice. So I hereby nominate you to represent us.

Janet said...

I'm beginning to see why you didn't feel like telling this story too much.

Competent doctors have saved my life. Less competent medical personnel, well, 'nuff said.

I have an unusual allergy or two myself, the kind that doctors never even think to ask about. Fortunately they don't bring on seizures, but you really don't want to see what post-surgery looks like when you're allergic to the bandages. Doctors don't know everything by a long shot. And remember, 50% of them graduated in the bottom half of their class...

It certainly sounds like you did the right thing, standing up to the doctor. And I bet that some of the students thought you were right too.

Spy Scribbler said...

You know, it would be bad enough that doctors sometimes can't see the obvious, that half the time if you want proper treatment, you have to research and diagnose yourself, but why, WHY, do they have to act like arrogant, condescending assholes/bitches on TOP OF IT ALL?

I get so angry. They waste so much money, it's insane! I mean, listen to your story! Good God! But that's exactly how they are. It makes me see red.

Rebecca said...

You are a wonderful storyteller, and this story is very gripping! I appreciate your viewpoint, as I am "one of them." Not a NICU nurse, but a labor and delivery nurse.

And good for you, for standing up to that neurologist!

On a side note...My students just learned about coarctation yesterday in class. I'm thinking about assigning them to come read these posts so that they can see things from the patient's perspective.

DrillerAA said...

I'll stop back by this week-end and read it all. If you want to see some funny photos, stop by my blog. There's a party going on.

Barbara Martin said...

Well done, Travis, for standing up to the doctor. They are not always right even if they think their experience and knowledge surpasses yours. I have 12 drug allergies due to doctors knowing better than I.

Your story is very touching; the pain self-evident in the telling as you bring the fear out into the open. Thank you for sharing this with us.

Janet said...

spyscribbler, they're not all that bad. Like I said, alert doctors saved my life on one occasion, and the removal of a tumour from my thyroid was done so well, (by a charming old gentleman with a Polish name and a South African accent) that all the medical personnel who checked on it afterward marvelled at his expertise.

But like everybody else, there's a mix of the wonderful and the less wonderful. I've had plenty of experiences with the less wonderful too, but they don't make as gripping a tale as Travis's. Mostly bad bedside manners.

And there are other professions that work on arrogance. My son, who studies architecture, passed this one on to me:

What's the difference between God and architects?

God knows he isn't an architect.

Ello - Ellen Oh said...

Travis I feel like I am there with you through this whole heartrending process. But I am so proud of you for confronting that arrogant doctor! So many parents would not have done this and you were great!

debra said...

Good for you, Travis. We once had a pediatrician who told me that the parent was the best diagnostician---it was his job as a doctor to confirm the parent's diagnosis.

Gregory Anderson said...

I don't know how you find the time to write.

But, I'm thankful you do.

That Janie Girl said...

Beautiful writing, Travis. I want to skip your blog and come back when I can read it all at once.

But I probably couldn't handle it. You're made me cry with all three posts.

Robin said...

Good catch Travis, way for you and Jen to go with your instincts. Let's face it...MD's jsut have to pass med school, I'm not saying it's easy, but even I could make a 70 if I put miy mind to it.

I just really want to ask any doc I see..."so, by the way, what was your GPA in med school? Did it, by any chance, put you close the the hallowed right hand of God or is that something hidden in the hippocratic oath that we mere mortals are not privy too?"

There are some great docs...and I wouldn't want to be a doc in this wonderful world of managed care and no cap on litigation...but if there ever was a profession prone to egomaniacs (as opposed to writing!) then MD is it.

Greaty ongoing story....I'm praying to God, since you have two amazing, robust sons...that this one is one of them.

You and Jen get 1,1456,398 good parent points...regardless. I promise you, this is your voice.

Mom In Scrubs said...

The best way to one-up a doctor: plain, clean reason.

It's so much more exciting to make symptoms fit a dramatic "syndrome" than it is to put 1+1 together and get 2.

Bravo for taking a stand, especially under the circumstances!

Terri Tiffany said...

Hurray for you standing up for your child and what you logically knew what was right! Such a choice but thankful you made the right one!!

Charles Gramlich said...

You were absolutely right to stand up to the woman about the medicine. Once when my wife was in the hospital and rehab they kep giving her medicine that made her pass out. I pointed this out to the doctors and they denied that it could be the case, although they eventually decided that it was and when they stopped the med the fainiting stopped. I remember one doctor saying to me very arrogantly: "I'm glad it's so obvious to you but it is not at all obvious to her doctors." This was before they admitted they'd been wrong.

Your experience must have been absolute torture. I feel your pain.

Cheryl Wray said...

I'm really enjoying your story. Keep on sharing it with us!

(As a writer, I totally do the same thing when I'm recounting a story. The details seem to get more lengthy, as I remember more and more about the experience. Very cool!)

I really feel also for those families who lost their little children. So, so sad.

I'm eager to see how it all turned out.

Melissa Amateis said...

Travis - BRAVO for you for standing up for your son. You absolutely did the right thing.

Wow. I am on pins and needles waiting for the next installment!

Unknown said...

I'm with Pack...I'm thankful that you write.

Take as many installments you need, bro.


The Anti-Wife said...

Good for you for doing the research and standing up to her.

Melanie Hooyenga said...

This is enthralling. I agree with those who've said you should publish this.

Patti said...

nothing brings out a parent's fierce warrior faster than screwing with our babies (and i say babies even though mine is on the cusp of 25). man, i loved that you stood firm. deserves a beer. feel free to drink the one you were gonna give me. you earned it.

Annie said...

Good for you for sticking to your guns and listening to your gut! Can't wait for part four

Dizzy Ms. Lizzy said...

I'm so glad you stood up to that Doctor. Some of them get the "God" complex going, and you really put her in her place. Good for you!

Shauna said...

Just reading this is causing me to tear up. I can not imagine going through that kind of hell. When it's our kids, it's the worst kind of pain. I'm so glad you stood up to the doctor and did what you believed was best for your son. And it obviously worked!

Glennis said...

A heart wrenching story, very upsetting. What some little ones have to go through, and their parents!

alex keto said...

my gosh, what a series

G. B. Miller said...

Good story Travis.

I (and probably everyone else) sincerely thank you for sharing this particularly personal slice of your life with your readers.

Lexi said...

Take as long as you need. We'll be here.

Phats said...

Wow no wonder this was hard for you to write, I am sorry you all had to go through this, this is truly an amazing story. I can't wait for the rest!

I put a lot of faith in doctors, because they did save my life, but they can also be wrong as well just have to find the right ones

Mr. Shife said...

I thought this was the conclusion. Oh man Travis you are killing me. I will be here for the next chapter.

J. L. Krueger said...


I'm catching up on all your posts that I've missed.


Neurologists and Neurosurgeons are among the most arrogant doctors. So says my wife the Neurosurgical nurse of 28 years. And they are frequently WRONG. Just ask the nurses who work with them.

Bubblewench said...

Damn. I get busy at work, and you start to pour your heart out. I'm on the edge of my seat to hear the rest.

JM said...

This is so heart wrenching to read...I can feel your pain as I read it, but I know it is a miniscule compared to what you were really feeling.

Junosmom said...

From reading the comments, it seems we all have had similar experiences that you had with the doctor. Ever want to go back and tell her that he never had another seizure. Set her straight?