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.