Time, a feral beast. Sometimes it flies too fast and sometimes it moves undetected at a sluggishly, sloth like pace. Can’t have it both ways but there are times that I wish I could control it. Would that be curse? Perhaps.
I’ll never know the implications of taming one so wild. What I do know, it is a giver of meaning in regards to the lessons of life. Many of my life lessons have been enhanced by the very nature of time. Especially, the appreciation I have for the life I live, the comfort I am fortunate to have and the love I feel for the people surrounding me. I may only have these things for a short amount of time, as lifetimes aren’t guaranteed, losses can and do occur, and feelings can fade, all over time, which adds to the significance. We have no idea what timelines are in store for us, so we must spend our time wisely.
Clem walked out of the O.R. and collected me in the same hall he’d left me. He insisted on feeding me, as hunger wasn’t a cue I’d felt over the weeks. I was in survival mode overdrive and food wasn’t part of the deal. Despite this, Clem hauled me to the cafeteria. We’d had nothing but time and he was insistent that I use it wisely to get myself into better shape for the rest of the journey that lie ahead. Wise words.
I managed to get half of the food down that was set in front of me, but I had to fight to keep it there. I couldn’t sit still, my legs bounced with anxious energy under the table, ready to spring into action at a moment’s notice. We had one of those lighted vibrating disks that they use in restaurants to signal when your table is ready, except it was to tell us that our kid was ready. It was the only thing tying us to Caelan at that point.
I eyed it constantly, awaiting its flashing red lights and robust vibration so I could be with my daughter. I felt like a sprinter at the starting line, waiting for the pistol to fire so I could take off. It’s so odd feeling completely exhausted yet feeling an overabundance of anxious energy just sparking away from within, waiting to be unleashed in an explosive burst…bizarre.
We tried going for a walk after eating, but all I wanted to do was sit outside of the recovery area where we were told to expect to see Caelan after surgery. While sitting there, another dad was waiting for his son. He had been one bed ahead of us that morning in the hallway outside of the O.R.
I wished to be in someone else’s shoes
We talked for about an hour with this dad, about how anxious his son had been after breaking his arm and needing surgery to fix it. He said that they found out later that he needed a second surgery to remove the screws. Apparently, the hospital hadn’t been upfront with him and he wasn’t impressed. He asked about who we were waiting for and why, and that’s really the first time I noticed the reaction from someone, when you talk about your kid having cancer.
The father was called into the recovery area, about an hour before us. The last bit of the conversation had been about why it was taking so long. We’d been told a much shorter time, but as it was, hours had elapsed. It was a while before our buzzer summoned us, I didn’t hesitate and was up in a flash. Clem tried to get me to slow down but I wasn’t having any of it.
A nurse took us to a curtained area to wait for Caelan, the same space we reported to before being wheeled to the O.R. I couldn’t sit down, and paced the small area in circles, two and a half steps before swiveling on my heel and repeating the process, over and over. We finally heard someone being wheeled through the door, was it another false alarm, or was it finally her? The curtains were pulled back, and as the bed rolled into our ‘stall’, I saw her. I felt relief at seeing that she was doing okay, but knew that this was really just the beginning of our journey. Knowing what I know now, there are varying levels of torment. Although this felt extreme at the time, it was nothing compared to some of the other things we’d encounter later on.
Her nurse got her settled, all the formalities between staff were exchanged, and we were left to await Caelan’s awakening. At first, when we tried to talk to her, she was so groggy that she couldn’t even open her eyes. At one point, she got cranky and told us to just leave her alone…we think that’s what she said because all she did was grumble. We were told that the surgeon would drop by to see her and talk to us. Caelan had to eat and drink, and after that, we’d be free to go. Alrighty then, all we had to do was wait.
I don’t know about you, but I despise waiting
And wait we did. We saw other children rolled in from their surgeries, sitting up within moments, eating and drinking and heading off happily with their parents. All we could do was sit (honestly, I wasn’t sitting much), and watch our heavily drugged daughter sleep. At least she wasn’t in pain, as far as we could tell. The dad we’d met earlier, was gone within maybe an hour, his son walking out on his own and seemingly fine. We knew her surgery was in a delicate spot, but we were a bit concerned with how long she was taking to become more alert.
While sitting there, it made me appreciate everything I’d had before all of this happened. Life wasn’t perfect, but we were all healthy and satisfyingly happy, comfortable. I hated every second that we sat there. I was mad, sad, everything you could think of, and feeling the lowest of low. Why Caelan?
The nursing staff tried to get Caelan to become a little more alert (we desperately tried as well), to no avail. The surgeon finally stopped by, later in the afternoon, around 2 – 2:30 p.m., I believe. Another moment of my life that I won’t soon forget.
It’s the simplest of things, insert rant here
I have nothing against our surgeon, and I am very grateful for him. I know and understand that they need to wait until they have concrete evidence as to what is diagnosed before revealing the mystery of what ails the patient, but for fuck sake. If you’ve been doing it for a while and you have a pretty good idea, why torture people?
Policy…suck my dick. Be a decent human being and speak to us accordingly. If you don’t feel that someone will understand, or you really don’t know, say it or apply the bullshit appropriately. Otherwise, honesty and transparency go a hell of a long way. I feel that this has to be said.
The mind fucking that goes on from people within this faculty is astronomically disgusting. Be a decent and compassionate human being with some understanding, please. If it’s this bureaucracy I keep hearing about, stand up and say something. As far as I’ve seen, there are plenty of you out there…strength in numbers, I can’t say it enough. Otherwise, you’re an enabler and a part of the problem.
With that, I’m sure you’re not surprised when I say that I no longer trust anyone or anything in modern medicine, right off the bat. I’m sorry, trust is earned and doesn’t automatically come with an expensive degree. The hard work it takes to earn it, cannot be bought and that in itself, makes it that much more valuable. If you have trust, I hope you understand how precious that is and don’t take advantage of it. I understand that I may have to make the concession in order for someone to earn my trust, but at this point, that opportunity has long flown the coop. They’ll have to make the concession first, not me.
As you learn more about the shit we’ve gone through and witnessed, I wouldn’t be surprised if you feel the same way. I know, perception and perspective, but from where I’ve stood and still stand, gross violations have and are occurring. It doesn’t happen to everyone in every situation, but I am aware of it occurring, and at a rate that I feel is unacceptable. I understand that we are all human and mistakes happen but some of this shit is beyond deplorable and unforgivable. I am no longer blissfully oblivious. Protect yourself and be your own advocate. Thank you for hearing me out.
Anyway, he’d finally finished his surgeries for the day and popped in to see Caelan. By that time, we were one of the very last families in the recovery unit. All of the ones we’d been grouped with, the first round of surgeries when we first arrived that morning, had already been long gone. I still wonder where that time disappeared to.
Difficult conversations and fears becoming reality
The surgeon said things went well. Thankfully. We asked if he could remove the ‘lump’ entirely but he said no, too many vital structures. I pressed, asking about what we were dealing with. Of course, he was quietly trying to ignore me, but I wasn’t going to accept it. I didn’t get angry, belligerent or rude, it was a simple question from a concerned parent. I waited silently and patiently.
This guy, had been in the game a while, I looked him up. One of the best we’d been told which I had confirmed and will reconfirm later on in this story. He begrudgingly said something to the effect that it was cancer, probably Non-Hodgkin’s Lymphoma but wouldn’t be certain until we got the results. Thank you. Obviously, I know he doesn’t have a fully functioning lab in his back pocket, but I’ll take his guess any day. He was pushing to know by week’s end (it was a Tuesday, if I recall). He gave us his card and told us to reach out if needed. We thanked him as he left, struck again by that feeling of overwhelming fear.
We went back to trying to get our daughter to wake up. Caelan couldn’t stay awake long enough to eat or drink anything. The staff had tried to get her to drink something and eat a Popsicle, but she was totally out of it. It wasn’t long before another new nurse arrived, a very determined and procedural by-the-book one. She sat Caelan up, and made her eat and drink something before getting us the hell out of there because it was closing time for the unit. It was shortly after closing, if I remember right…3:30 p.m. or so.
Caelan was the consistency of a noodle, and trying to dress her was a nightmare. I felt like I could feel her pain or discomfort, it was almost a squeamish feeling, so I was extra gentle with her. I never used to be squeamish, so that was new. We were careful, trying not to knock the huge bandage across her clavicle while trying to get her arm threaded through the arm hole of the button up shirt we’d brought for her to wear. We probably looked like we were trying to dress a giant, slimy squid. Caelan kept slinking down, her head trying to roll while we steadied it so we wouldn’t open the fresh wound on her neck.
And there’s the door…
I understand, it’s closing time and the staff wants go home, but we had no idea that waking Caelan up was going to be this difficult. We’d never done this before, never experienced it. It no longer surprises me that hospital staff just expect you to know everything. We don’t, but they think we all do.
Our next task, was to figure out how to get her to the car. We were unfamiliar with the hospital and had no idea where the entrances were from there so we could pull the car closer. As luck would have it, we had parked nearly all the way across the damn place. Fuck my life, I should’ve brought a wagon.
I believe we asked if they had any wheelchairs before leaving the unit, but were told no. It got to the point that Clem had to scoop her up and pack her, as gently as he could. I was in charge of our belongings. Assistance was never offered or anything, nothing. We’d overstayed and that was made pretty clear. We were on our own.
We struggled down the halls while trying to navigate the hospital to the parking garage. Caelan was dead weight but Clem managed to get her most of the way without having to stop much. She tried walking here and there, but struggled to stay upright. It was probably a good 10 to 15 minutes before we finally got to our destination.
To say I was a little pissed at what I saw when I got there, is a lie. A whole whack of wheelchairs were strewn about beside their collection corral where they were supposed to be returned. That’s why we couldn’t find one to use, no one had collected them and returned them to the hospital yet. Helpful. Clem said he’d get the car and I said I’d wait with Caelan. A few minutes later, Clem pulled up and we loaded Caelan into the car. I decided to sit with her in the back, in case she needed anything. I wanted to be close if something happened.
Now, the nursing staff wanted Caelan to eat and drink before she left, and ensure she wasn’t going to bring it back up, as in vomit. And, if you remember what I’d said about how much I love puking before, well you’ll know that I just love to deal with that stuff. So yeah, I think you know where I’m going with this.
If there is any, and I mean ANY advice that I can offer after this experience, it is this:
- Don’t bring a ton of shit that you won’t use, we’re usually ‘too’ prepared;
- Secure a bloody wheelchair before you leave whether you need it or not;
- Have someone move the patient transport vehicle around to an exit close by your discharge area, preferably not in a parking garage (scout it out in advance);
- Do not, DO NOT under any circumstances, drive through a twisting and turning parking garage with ANYONE who has had any sort of anesthesia or sedation that is prone to vomiting, or doesn’t know if they are prone to vomiting after, and;
- Bring a big barf bucket with napkins, a bottle of water and some wet wipes (you’ll thank me later).
Do yourself a favor and be prepared. Don’t do as we did.
So, Caelan is loaded, we hop into the car, and off we go…from nearly the top of the parking garage. If only I could go back and tell myself that I was an idiot for parking there. The very bottom, is where the exit to the street is located. We completed the first round and I asked Caelan how she was doing.
“Fine,” she replied.
Starting into the second turn, “Mom, I don’t feel so good…”
Clem slows down. I look at Caelan, she looks extremely pale.
“How are you doing Honey?” No sooner had I said that, she says,
“I’m gonna be sick.”
I grabbed the tiny, useless vehicle garbage can that couldn’t even hold two snot rags with one booger between them and thrust it in front of Caelan’s bobbing little head. Up came the toast, Popsicle and water they’d made her drink in the recovery area, right before they kicked us out. Yum. I was worried about the strain on the neck wound and anxiously watched her finish the task at hand.
I waited, and she gave me the thumbs up while I removed the barfed up stomach contents from in front of her face before she passed back out again. We had stopped in the middle of the road and decided to take the corners at a snail’s pace. I feel like such an idiot for parking there and making my kid go through that. Not one of my finer moments.
We finally got out of there and made the hour long trek back home. I put my daughter into my bed, insisting that she do absolutely nothing for the rest of the day and focus on recovering. That was hard to do. She was fully awake by that point, and kept reassuring me she felt fine.
Growing up way too soon
It was a beautiful spring, and the neighborhood kids were all outside playing in the street. I had the window open and all Caelan wanted to do was go outside and get some fresh air. I made her rest and I believe she had some chicken noodle soup. Lola stayed with her after fanning out an impressive display of gifts that she had purchased with her grandparents. They’d had some retail therapy that day and took Lola out to do some fun things to get their minds off of the surgery.
I watched my daughters talking about their new shoes and other affects, wondering what they were thinking and feeling. I didn’t want them to be afraid, I wanted them to be the carefree kids they were supposed to be. I just kept asking the almighty most important question, over and over in my head, why? Why were we dealing with this? Why does anyone?
This is not a normal childhood. These are not things children should have to deal with. They should not be worried about whether they’re going to die or what cancer treatment is going to be like. The should be wondering what the weather is going to be like the next day so they can play, what flavor of ice cream is the best, and what they aspire to be when they grow up. Not this. This is bullshit.
Sleep continued to evade me
I didn’t sleep at all that night, I was terrified of Caelan moving and opening her war wound. I had her propped up, and every time she moved, I re-positioned her back upright. I was beyond exhausted and the nervous energy flowed like Niagara Falls. I’m not sure if I’d actually nodded off, but as soon as I’d sensed any movement, I was wide awake in an instant.
Clem started out trying to sleep in Lola’s room, so I would have space beside Caelan. I was in such a desperate situation, that I didn’t feel I could handle it and needed him close by, so he ended up laying on the floor with a blanket. I can honestly say, I couldn’t handle anything at that point. Anything and everything pushed me over the edge into complete irrationality.
My mind wouldn’t stop and the overdrive just kept on going. The fraying of every nerve and the panic I felt made absolutely every little thing an overwhelming ordeal. I realized that there was no way around it. I had nowhere to go, but through it. I kept telling myself that I wasn’t the only one and that we’d manage, just be strong for the girls. You got this.
I didn’t feel like I got this. I hated every second of it but I survived that night. There’s something about being in the darkness during trying times that ignites fear, even when I used to find the still of darkness soothing. The birth of the new day beginning to appear, feels like salvation, the comfort of light. I used to see the atrocities of society during the day and find calmness at nightfall, but I feel the opposite these days. No time of day feels as calm as it once did. Life has certainly changed.
Another day, in hell
Caelan awoke, feeling well. I was still humming with fear. No sleep again and nothing but anxiety to get me through the day. Wahoo.
We had to peel off the bandage, per the surgeon’s orders and I thought it was no biggie. It was a big gauze pack that had tape around the perimeter, I got this…or so I thought. Man, I feel like a fool for even thinking I got this! I never had it to begin with, so why on Earth would I ever think that I had it at all? Anyway…
I can’t stand to cause anyone any pain. It’s like I feel it, while someone else is feeling it. Weird, I know. I hadn’t been prepared for this, and I can honestly say, this was far more traumatic for me than I have ever experienced. I know what you’re thinking, ripping off a band aid is nothing to cry over, but it certainly was for me.
Caelan was a little freaked out because she didn’t want to see her new lifetime accessory (incision), otherwise, she was doing quite well. She was my laid back, easy going kid, keyword here is, was. I had hoped for an easy day of recovery for her, once we got the covering off. Yeah…if only.
I had her lay on the floor with a bunch of pillows and blankets, trying to make this a painless and calm experience for her. I started with a corner and began to try to lift it. I was calm and reassuring, hoping that my confidence would help quell the anxiety. As I pulled, I saw how super glued it was to her delicate skin and silently hoped that the surgical site was far from the tape holding the large bandage. If this was how adhered it was, it was going to be a painful endeavor. Still, I kept calm, it’s only tape.
Tape, trauma and another rant
I tried to gently pull the tape off and support her skin simultaneously, but the adhesive wouldn’t release. I remembering thinking how great it was that this shit stuck so well, but wondered if any thought was put into removing it. You know, there’s this thing called forethought, and I will tell you that after going through a lot of this medical bull, the thing I want to ask is this, where’s the ingenuity and strive for excellence that’s supposed to go into creating this shit?
I swear, it feels like the inventors are a bunch of half-assers. Development in progress? I doubt it. I wonder if there’s a hotline or comment card somewhere that I can fill out. I’m not just bitching for the sake of bitching either. Just think, that’s all I’m asking. If it sticks, do you have an idea how to go about un-sticking it?
Consideration should be a part of progress, shouldn’t it? Maybe, these inventors…hell…throw in the medical faculty and any profiteers too, should test this junk out on themselves, yes? Take some of this tape and stick it to a hairy, sensitive part of your body that’s been sliced open (or not, I’m not a sadist, so your choice) and then get back to me. I’d say try it on your children, but even I wouldn’t cross that line. I’d like to think that other’s would support these testing measures too, or maybe I’m out to lunch?
If you wouldn’t apply it to yourself or your loved one, go back to the drawing board, please. I asked nicely. I could’ve gone full ape and found out where you lived and stuck a ton of this shit all over you unsuspectingly, but I didn’t. I don’t wish any of this shit on anyone. Try it, you won’t like it.
I realize now that there isn’t any consideration for the real world. It feels as though they flippantly act like they can do no better, when in fact there’s plenty of room for improvement. Is this coming from the medical community, the profiteers, or from the supposed inventors? Aren’t we, as humans, hardwired to strive for better? I apologize for the rant, but this experience has stuck with my kid and created fears that just blow my mind. And that’s just the stupid ass medical tape she encountered. Crazy, isn’t it?
I struggled for over two hours, trying to remove the tape. I attempted to use rubbing alcohol on the adhesive, being careful not get it on the incision, I tried water and whatever else you can think of to get the damned thing to release without pulling at her tender neck. All that caused my daughter was pain. I eventually managed to get the tape free, only to discover that the gauze was firmly adhered to the incision site. Well fuck me.
At that point, I just couldn’t keep torturing Caelan. She was a trembling, terrified, crying mess surrounded by pillows strewn on the floor. She’d been nothing less than brave before all of this and the fucking tape was her Kryptonite. If ever I felt like the shittiest mom on the planet, it was this moment. Nothing I could do helped her in any way.
She just wanted the stupid thing off, without any more pain and trauma and have a normal day. Simple. My mom couldn’t handle it and neither could Lola. I never thought I’d see the day that an object as simple as this, could inflict so much mental and physical havoc. I know, it’s only tape.
Heigh-Ho, Heigh-Ho, it’s back to the hospital we go
I called Clem at work and apprised him of the situation. He decided to contact the surgeon and let him know the issue. Caelan didn’t want us to do any more, and by that point, I didn’t have the heart to keep hurting her. The surgeon was great, and he got back to us right away, thankfully. Consequently, Clem had to load Caelan back up and drive her back to the hospital, again. I was pissed. Couldn’t anything go right?
Turns out, (and I didn’t need an extravagantly paid ‘genius’ to figure this out because I already knew) the wound seepage had stuck to the covering, which was also stuck to the incision. I didn’t want to pull it off and run the risk of reopening the incision. I know people who’ve ripped out stitches easily, and I didn’t want that to happen. Caelan had been through enough already. I’d been hopeful that they had a way to get the gauze to let go painlessly and they’d be on their way. This is advanced, modern medicine after all.
Their solution, just rip the damned thing off. If you’ve ever had a wound stick to a bandage, then you’ll know that ripping it off sucks. But this is a children’s hospital and the patients are resilient, so who gives a shit. The show must go on and the covering had to come off. Time is money.
Rip it off, who cares if you’re causing a child to be traumatized. Go to psych services and they’ll deal with it, or if they must, just knock them out. Honestly, I feel that that’s how they think. No big deal, they’re kids and they’ll be fine. I hate to be the bearer of bad news, but it’s not fine. My kid didn’t even bat an eyelash when we told her she needed surgery, never had one single issue about accepting what was to be, and now, now is when the damage becomes apparent. Maybe I should write a bloody paper.
I know they wanted the site to stay dry, but even moistening the bandage to get the seepage to release, would’ve been more humane, if that’s even possible. I’m sorry, but we don’t have a better way? Hospitals, in my opinion, are of absolutely no help in regards to avoiding trauma. I feel that we will be dealing with it forever, especially my daughter. After the surgery, walking into the hospital has never been the same.
They sent her home with a clear, plastic like covering called a Tegaderm Film that stuck to the site. It’s great, you can shower and everything because it seals up the incision tightly, BUT, it sticks so well that it also doesn’t come off easily. So, how do they take it off without adding more trauma? Well, the same way they took Caelan’s dressing off in the first place, with the greatest and latest technique available! They rip it off. Fun, right?
I don’t know about you, but ‘ripping’ and ‘trauma’ wasn’t what had come to mind when they said recovery. I know surgery and recovery is no cake walk, and I guess I’d expected things to be a little different because a child was involved. I was very wrong.
The colorful packaging that we see on the outside, doesn’t match the shitty inside. I know, there are worse things, but I realized that we aren’t nearly as ‘fancy’ and ‘evolved’ as we think. Modern medicine is the same as it’s always been, business. It just has better advertising, fancier packaging and deceptive allure. My daughter’s life was about to be placed within the hands of a callous business, not the compassionate and caring institution I thought medicine stood for.