So I spent the last few days of my twenties doing the thing that has come to define my twenties...taking Clayton to the hospital. It somehow seemed ironically appropriate. Since the doctors weren't satisfied with the CT results from June, they had us do an MIBG scan last week.
One of the things that has changed with scans over the years is how we get Clayton sedated. Last week was no different. For years he had a Hickman or a port and so he was either already accessed or had a port to access directly and there was no need to "search" for a good vein. Renal patients by the way are not the easiest sticks as I understand it. Once the port was removed last year, we had to navigate new territory figuring out what worked best for Clayton and then the anesthesiologist and myself as the parent.
As a parent having someone stroll away with your child who is scared out of their wits (and
always often screaming) is the most horrible thing...at least for me and George. Once Clayton is asleep I am greeted with overwhelming relief, but getting to that point is not always easy. And not all anesthesiologist abide by the same "rules". Some prefer parents help, some refuse to allow it. So as the parent you never know what you are going to get. Only twice have I ever had to request a different anesthesiologist and it was the same guy both times and my mom was my witness this guy had issues. Serious issues.
Hospitals also have different policies as well. In Birmingham, they always carried him away awake without being accessed. It was hell. George and I had to sit and listen to Clayton screaming from behind closed doors. It feels like such a betrayal from a parent to a child to send your child with strangers to poke and prod. MSKCC and Sacred Heart tend to operate on the same wave link which is nice for us. They are most concerned with making the child as comfortable as possible and if that means they have to step ever so slightly out of their comfort zone then they are OK with that.
What I have learned about sedation with children is this:
- Surgical procedures are the exception and you never get to go back there with your kid. But they typically give them versed prior to going back so you are at least met with the idea that your child shouldn't remember the moment you sent them away with strangers.
- Don't be scared to ask. You have the right to ask anything you want and that means special request to accommodate a child. You might not get the answer you want, but don't let that stop you from asking.
-A lot of times hospitals and anesthesiologists, nurses, etc. have this notion in their head that they are somehow sparing the parents from seeing something done to their child. Maybe you are the kind of parent that can't handle it without yelling stop, stop or something. But if you are more concerned with easing your child's anxieties than shielding yourself and you know you can handle it, then make that clear to whomever needs to know. Every time I hear, "If this is going to bother you you can leave," or "we do this for the parents," I can't help, but laugh. All I can think is I have been through way worse. Granted many people haven't, so they have to decide for themselves what they can handle. My personal experience has shown my heart much prefers to stay and comfort my child as much as a can even though I know he will still be distressed. No one can comfort a child like a parent.
- The first time Clayton was ever sedated with one of us, it was George. This was about a year before his cancer diagnosis. Clayton was held by George as they gave him some propofol through an IV to sedate him for a scan. I remember after, George said, "Thats horrible, I never want to do that again. It felt like he died in my arms. " Little did we know.
My best advice is let the doctors and nurses focus on what your child's body is doing and if you are holding your child hold them firmly because their body will go limp as the propofol hits their blood stream. As the parent focus on the fact that you just eased your child's experience with this traumatic situation and they are now peacefully sleeping. Clayton and I usually count to ease his anxiety. Sometimes we throw in an ABC song. Whatever works and keeps him focused on me and not them.
Anyway, since having Clayton's port removed, things have changed and we have been trying to figure out what works best for him. Back in March they took him back with the intent of giving him nitrous and then getting an IV. This would have been the second time we had done it this way with us waiting in the waiting room. He fussed a little this way, but it didn't last long because of the nitrous. Well, this time, the anesthesiologist wasn't in the room yet and they decided to go ahead and try to access him. Big mistake. Huge. I was outside the CT door listening to him scream like mad and even my mom in the room down he hall could hear him screaming. She kept poking her head out of the door looking at me with a question mark on her face. Since then, the nurses have made a point to bring me back every time, even for the nitrous part. I didn't even have to ask, they just knew that was what was right for my kid. I always held him as he was put to sleep when he had his port and hickman, so the only part of this that was new to me was the nitrous.
So last week, Clayton did even better than the time before. He had tons of anxiety of course, but there was minimal screaming and I held him the whole time he got nitrous, while they got IV and all the way until he got the propofol. We counted and sang; anything to get him through it. Which he did and we found a rhythm that works for everyone when it comes to Clayton sedations. Whoop, whoop!
We are waiting on the results of those scans and might not hear anything until next week. Which isn't awful because if they don't call before then, then at least we know there isn't an emergency. We are also still waiting to hear about the scheduling of his kidney procedure. As luck would have it, his urology nurse is leaving Nemours and so in addition to the other complications we now have to work with a new nurse practitioner trying to get up to speed on all of her patients. So we wait, wait, wait.
