So much has happened in the last 48 hours, I don’t even know where to begin. Do I go for shock value and start with Ben and me walking into the emergency room at midnight, both covered in vomit? Do I go for a sweet and comedic tone, with Ben taking a hot bath earlier that evening and demanding to be left alone in the bath with the lights out and a single candle for illumination while listening to Enya? Or do I start with a moment of raw terror, with Ben fighting a 102.5 degree fever and shivering so violently that the entire bed trembled beneath him? The truth is that these last two days are a jumble inside my brain, a nearly incoherent mixture of fear and resolve punctuated by moments of nearly sublime comedy. If you had asked me at any point this weekend where I imagined I would be tonight, the answer “sitting by the fire pit at a theme park resort” would never have even crossed my mind, and yet here I am. Literally nothing makes any sense at this point, so I am doing the only thing I know how to do – write my way through it and try to find some kind of coherent plot. It won’t be an easy task.
As you may or may not know, my son Benjamin is autistic. He also suffers from Atypical Cystic Fibrosis, a genetic time bomb that has been assaulting his pancreatic system for years now. In the past twelve months he has had five different endoscopic surgeries, and one major invasive surgery in which half of his pancreas was removed along with his gallbladder, duodenum, a portion of his bowel, and other bits and pieces in the vicinity. I have lost count of how many days we have spent in the hospital with him, spread across three different hospitals in both Florida and Alabama. It seems like it just never, ever stops. Since his major surgery at the end of January he has made steady progress back towards some semblance of normality, but in the past few weeks all of that has turned on its head.
Sometime in June, with no apparent trigger, he started eating paper again. The pica is something we have battled in the past. We thought it had been conquered. Sadly, that is clearly not the case. In mid-June Ben started sneaking away tissues, toilet paper, crayon wrappers – any paper he could get his hands on without being noticed would end up in his mouth and then inevitably lodged in his bowels. Around this same time he became increasingly lethargic, spending most of the day either asleep or else lying in bed with no energy to venture out into the world.
To add insult to injury, we also discovered last week that his wisdom teeth are coming in, with the two lower ones already impacted. Because of his various issues, any extraction needs to be done in a hospital setting. This has been a nightmare to arrange, and as yet we do not have a date to get them out. At this point it may be another two months before it can happen.
It is against that backdrop that I picked up Ben for the weekend this past Friday afternoon. His mother informed me that he had not eaten all day, and that he had already taken two hot baths. She was obviously concerned, as was I. She almost decided to cancel a trip she had planned for the weekend to go visit her grandmother in South Florida, but in the end she trusted that Ben would be okay and that I would keep her appraised of the situation throughout the weekend.
On the drive home Ben kept leaning across the seat, begging me to put my arm around him and rub his back. Several times he took my hand and pressed it into his abdomen on either side just under the ribs, while at the same time rolling and flexing his belly. Most concerning to me, he did this in absolute silence. It was barely 4pm and I was already pretty freaked and starting to consider a trip to the emergency room. I tried to focus and remain calm and objective, even as we arrived at the house and Ben asked to take a hot bubble bath.
The bath seemed to sooth him, and as he relaxed so did I. Perhaps I was just overreacting, I thought to myself. Obviously something was wrong, but it was not serious enough to warrant running off to the hospital.
Throughout the evening Ben stayed very quiet, and showed no interest at all in food until bedtime. When he asked for chicken and fries at 9pm, I agreed. Normally I would say no that late in the day, but the fact that he had an appetite seemed encouraging and I wanted to support that. By 9:30 he had eaten and then gotten into bed. It seemed he was settled in for the night.
I was about to drift off to sleep myself when Ben truly freaked me out by suddenly appearing in my bedroom and climbing into bed with me asking to be held. He had not done that in *years*, and just like on the drive home he did it in absolute silence. After a few minutes of burrowing into me, he finally said, “Daddy… I want… take a bath.”
At that point I knew in my core that we were headed to the hospital. But I also needed a few minutes to make some phone calls and to gather up supplies to bring with us. I ran Ben a bath and was about to leave him to soak when he stopped me, asking “Daddy… I want… bubbles. I want… light off… candle…..”
Well now, THAT was new. I added some bubbles to the bath that was running, found a small candle, and left him to try to relax in the flickering light. Ben alternated between lying on his back, folding over, and lying on his stomach with his head flexed backwards to keep above the water. By that point I was on the telephone talking to his mother, and I made a nervous joke about him having a full spa experience and that all he needed was some New Age music in the background. She suggested Enya, and thanks to the magic of Spotify and an iPad that is exactly what I did. It would be the last even vaguely humorous thing that would happen for several hours.
At the suggestion of Ben’s mom I phoned the answering service for Ben’s GI doctor to tell them what was going on and to let them know that we would be arriving at the emergency room shortly. I gathered up everything I could think of that we might need, got Ben out of the tub and into some comfortable pajamas, and with that we were out the door and on our way to Arnold Palmer Children’s Hospital. Ben spent the entire drive folded forward over a pillow as I reassured him that he would see the doctor very soon.
We almost made it in time.
As we pulled into the parking garage Ben made a sound like a hiccup, and I glanced over and asked if he was okay. That was when his jaw practically unhooked like a snake about to devour its prey, and then a fountain of vomit erupted from Benjamin’s mouth. The pillow on is lap was covered in a sheet of bile and undigested food, with more cascading down across the car’s dashboard and center console. A second eruption covered my leg as I rapidly swung the car into a parking space and turned on the dome light to get a better look at Ben and assess his state. His face was pallid, devoid of all color and covered in a sheen of sweat. He looked miserable and confused, but I was relieved to see that he remained alert and aware. I reassured him that we were going in to see the doctor RIGHT NOW, and then I leapt out of the car and hurried to his door to help him out.
He was thankfully able to stand and walk with some support. In one hand I grasped the small bag I had packed and slung his blanket under my arm. For some reason I also brought his pillow, complete with its vile new surface treatment. With my other hand I guided Ben away from the car and over to the emergency room entrance. The few people milling about at 12:30 in the morning parted in front of us, and in moments we were passing security (where I had to surrender my keys because I had a pocket knife on my keychain and I was disinclined to take it back to the car) and into the reception area.
When we have gone in the past, there has always been a wait of at least several minutes while things like paperwork and insurance were sorted out. Not that night. As soon as we set foot in the lobby two different hospital employees leapt into action and guided us directly to a room in the crisis unit. One of them was kind enough to relieve me of that horrifying pillow, although there was still more vomit running down the front of Ben’s shirt as well as down the leg of my pants. Within moments the room was filled with nurses, technicians, and doctors. I explained what had been happening the past few hours while the medical staff cleaned up and examined Ben. Blood was drawn for immediate lab work, and within a few minutes Ben was sent off for a CT scan. An hour went by in a blur of sound and motion with Ben at the center looking as fragile and pale as bone china.
Interspersed with all of this frantic activity were a series of messages between Ben’s mom and I. She had made it all the way down to South Florida, but was now hightailing it straight back to Orlando. By 3am she had arrived, and Ben grasped her hand like a lifeline. The initial diagnosis was that Ben had a significant impaction in his bowels, most likely caused by paper, and they wanted to put in an NG tube to try to clear the blockage with a steady flow of GoLYTELY (a very strong laxative). They went as far as to begin to prep Ben for inserting the tube when the ER doctor changed course. Ben was going to be admitted to the hospital and sent up to the fifth floor, and the doctor up there would insert a more suitable NG tube (I was never entirely clear on the difference). We settled in and waited for the room to be ready and for transport to arrive. It took another two hours before Ben was finally moved upstairs at 5am. Along the way the decision was made to try to avoid the NG tube by having Ben drink the GoLYTELY diluted with Gatorade, and so we started encouraging him to take sips of the concoction that would hopefully help clear out his obstruction. If I was a more talented and wittier storyteller this is the point where I would come up with some kind of Audrey Hepburn / Breakfast at Tiffany’s / Holly Golightly reference, but clearly I am not that good. What can you do?
Now, somewhere within those two hours – as Ben’s heath situation seemed to stabilize and I was just sitting and waiting – I began to ponder the mess in my car. Sure, a large volume of that mess had been transported out of the car on that pillow and on Ben’s and my clothing, but without question there were still aromatic piles of festering liquid just sitting in my car waiting to cook in the Florida heat as soon as the sun came up. I did not relish this situation. Once Ben was settled into his hospital room I gathered up some rubber gloves (conveniently available in a big box on the wall of the room), a pile of paper towels, some wet wipes, and a trash bag. With Ben under the watchful eye of his mother, I trekked out to the parking garage (after first stopping by security to retrieve my keys) to do what I could to clean up the mess.
Now, think back. Remember ten or so paragraphs ago when I mentioned that I had turned on the dome light of the car to examine Ben? Well, do you remember me saying I turned it off? No. I didn’t even think about it at the time, I was just in a rush to get my son the help he needed. Six hours on, that oversight had come back to haunt me. The battery to my car was completely dead. With no other option, I unlocked the door manually and then used the light on my iPhone to illuminate the car interior while I did the best I could to remove as much of the mess as possible. It was… an unpleasant task. But you know how it is. You just do what you gotta do, and move along. After thirty minutes of scrubbing I had my car as clean as it was going to get (at least until I take it tomorrow to an auto detailer for a thorough scrubbing). If nothing else, the strong odor was mostly eliminated. Task completed, I trudged back inside the building to check up on Ben.
I walked into the room to find Ben’s mom hugging him and speaking softly to him as he shook with violent tremors. While I had been away his temperature had abruptly shot up to 102.5 degrees and he was in the throes of severe chills. He had also thrown up three more times, drenching the hospital linens which had then been replaced and subsequently drenched again.
In all the experiences of this past year, up to and including the huge surgery last January, nothing ever terrified me as much as that sight. This was not Ben being sick or constipated; this was Ben in absolute crisis. The past few hours of calm had been thrown to the wayside and been replaced by frantic worry. For nearly twenty minutes Ben shook involuntarily before he finally collapsed in exhaustion.
By this point we had all been awake for a solid 24 hours and there was no sign of relief any time soon. Drinking the Gatorade / GoLYTELY mixture was obviously a failure since his queasy stomach was not tolerating it. Putting in an NG tube was not an option since it would almost certainly irritate his throat and stomach and potentially cause more nausea. The doctors decided to not worry about the impaction at that point, and to treat the symptoms of what they now theorized was a viral infection. Aside from the fever and stomach upset, Ben’s white blood cell count was low and his pancreatic enzymes were elevated. His blood pressure was also shockingly low, to the point where during one check his numbers set off the machine’s alarm. He continued to receive IV fluids for hydration, and was given medication to fight the fever and to help reduce the stomach cramps. As the morning wore on his temperature slowly eased downwards and he began to regain some coloration.
The rest of Saturday is all one big muddled mess in my head. I was too exhausted to be rational, and the only saving grace to that was that it prevented my worry from becoming overwhelming to the point of incapacitation. Somewhere during that afternoon I left the hospital long enough to get my car jump-started and then ran home to feed the animals and grab a quick lunch on the way back in. Similarly, Ben’s mom left the room just long enough to get some food. Ben’s maternal grandmother and aunt also came in to offer their support, which actually cheered Ben up quite a bit. There was more monitoring and more treatment, and by 9pm Ben finally fell into a fitful sleep. With nothing else useful to do, and not enough room for all three of us to get any sleep, I left Ben in the care of his mother while I went home to take a nap.
Now, I don’t want to cast any aspersions on God or the Universe, but I have to say that it really seemed like things were being piled on a bit thick. I walked into my house and discovered it was nearly 90 degrees inside. In the middle of the Florida summer it was actually cooler outside than inside my home. I thought perhaps the thermostat was messed up, I made sure it was set to cool, opened up a few windows and turned on a fan, and then I collapsed into bed. Outside my bedroom window I could hear the heat pump running continuously, but clearly failing to do any good. I closed my eyes, and it seemed like mere moments later when I opened them again at 5am. I was drenched in sweat, and the home’s interior was still 88 degrees despite it only being 74 degrees outside. My A/C was clearly broken, and yet that didn’t even make my top ten list of things I needed to deal with. I threw on some clothes and rushed back to the hospital.
The good news is that it had actually been a fairly restful night for Ben. His fever was gone, and although he was awake for several hours on and off throughout the night he was never in any of the same kind of distress that had been so apparent the day before. More blood was drawn in the very early morning, and we were just waiting for those lab results and a game plan. It was a very quiet morning, all the way up through noon, and everyone got some good rest.
Since his fever had resolved the day before, Ben had been drinking a concoction made up of a citrus magnesium solution plus Gatorade, in order to attach the intestinal blockage from above. He was also getting enemas to attack it from below. By Sunday morning he was drinking straight Gatorade, and making successful and productive trips to the bathroom. At lunchtime he managed to drink an entire bottle of Ensure and kept it down with no problem. The doctors wanted to see how well he tolerated solid food, so we moved on to a small serving of chicken nuggets and French fries. Bearing in mind that it had been several days since he had eaten with any enthusiasm, it was very encouraging to see him practically inhale that lunch in a matter of minutes.
The crisis was over, so now it was just a matter of working through the very slow process of being released from the hospital. It was after 5pm before he finally was set free, and by 6:30 he and his mother were settled in comfortably at home.
As for me, I arrived back home to a house where it was quite literally 92 degrees inside, despite the fact that it was only 76 degrees outside. I was exhausted, and clearly the A/C issue wasn’t going to be resolved that night. My lovely wife, who has missed out on this entire experience due to her being away on a trip to the Pacific Northwest to visit family and friends, suggested that I get a room for the night at Cabana Bay – the new value resort at Universal Orlando. I thought that was a lovely idea.
And so, here I am at the end of a long, weird, and completely exhausting weekend. I am sitting out near the pool, right next to a fire pit in the waning light of the day. When I finish writing this I will shut down my laptop computer and go collapse into the bed in my nice, air-conditioned hotel room and I will sleep until I wake up. If I am awakened by housekeeping at noon, so be it. Enough is enough. Tomorrow I will get a repairman out to look at my A/C unit, and I will take my car to an auto detailer to be thoroughly cleaned. With any luck I will cap off the day with a relaxing massage. What I won’t be doing is working, I have no illusions on that front. The meetings department will just have to survive one day without me. I am sure they will be fine. I hope Ben and his mom both spend the whole day resting and recovering. We could all go a very long time without another weekend like this.
But I know the truth. At this point it is ingrained into my soul. It just never… ever… stops.