97) Cycle 5

Wednesday March 13^th, 2019. We travelled to SickKids for E’s scheduled 3-month lumbar puncture. This marked the end of Maintenance Cycle 4, and the beginning of Cycle 5. My mom had come down and stayed over. That meant we could leave early, and she could get help by getting J to March Break daycamp. The traffic into the downtown core was a bit lighter with many people off, or away for break, so the door-to-door trip only took us an hour. Much better than the usual 1.5 – 2 hour ones.

In hindsight, this story actually begins 4 weeks ago. We were at our satellite clinic for E’s monthly vincristine push & bloodwork. There was a problem with his port: our RN could flush saline into the port, but there was absolutely no blood return. He was able to get his vincristine push that day, but they had to do a finger poke to collect blood because they couldn’t get any out of the port.

Fast forward to 2 weeks ago. We were again at our satellite clinic, and our nurse practitioner & RN had asked us to bring E in with an EMLA patch. Instead of the usual finger poke when we go in just for bloodwork, they were going to try to access his port again to see if they could get blood return. It worked! Everything was good, or seemed to be....

Fast forward again to this week. At SickKids, E had his port accessed, but they couldn’t get any blood return, despite numerous saline flushes. We were told that this isn’t a problem, and this sometimes happens in maintenance. There can be a sheath blood clot around the end part of the tube that goes into E’s jugular vein. This sheath will open to allow saline, or chemo to be pushed, but it will draw up, and cover the end of the tube when they attempt to draw blood. It’s fairly common, especially in Maintenance when the port is not accessed as often. There’s a fairly easy solution though: they inject a drug called TPA, and let it sit for a while. TPA will dissolve the clot, allowing the port to function properly again. The only problem is that we were told that they would have to flush E’s port with TPA, and we’d have to wait 2 hours before checking to see if the clot had dissolved. If you check earlier, and it’s not dissolved, you have to start from the beginning again. So, we had an extra 2 hours added on to our day, waiting for E’s clot to dissolve.

The previous night, we had fed E solids a bit later than normal, because he needs to go under general anaesthesia for the lumbar puncture procedure. Patients can have solids up until midnight, milk, or juice up until 4am, and clear liquids until 8am. We fed E around 7:30pm, and I set an alarm to wake up to give him a bottle of milk at 3:30am. He didn’t just sleep-drink the bottle, he woke up. That had me awake, and also woke up my wife. Around 4:30am, I still wasn’t back to sleep, and J woke up, and was calling for me. I went to snuggle with him in his bed, but never went back to sleep. It was a fairly busy waiting room in 8D, and there were a few more kids than normal. Combined with a slightly busier than normal day, and the extra 2 hours we had to wait, E didn’t get his turn in Cujo’s Room for his procedure until 12:15pm. By this time he was so hungry, and I felt so badly for him. We brought a cooler with milk, and food for him to eat when he woke up from his procedure, and he was well aware that we had it, and he knew there was food inside. The poor little guy kept asking “eat, eat, eat”, or dragging the cooler out from underneath the stroller, and saying “open, open”. It broke my heart to see asking for food. We can’t explain why he can’t eat. He’s hungry, he wants food, he’s asking for food, we’re saying no, and he’s rightfully getting upset. Poor guy, he doesn’t understand.

His procedure seemed to take a bit longer than normal, and we found out that the anaesthetic didn’t work on him so well. They gave him his dose, whatever it was, and he was out, but not completely out. He was still moving, and twitching, so they had to give him more. They told us they gave him 120mL, which is a fair bit for someone with a mass of ~15kg. It still wasn’t working, so they had to add in an adjunct anaesthetic to completely put him under. They tell us that sometimes patients will build up a bit of a tolerance to anaesthesia if they are put under a lot. This is probably his 15^th or 16^th time under general anaesthetics in less than 2 years, so that’s fairly frequent. I wonder though, how much of his mood might have had an effect on it? He was hungry and agitated, so perhaps that had an effect, and caused his body to have a greater tolerance?

The biggest fireworks of the day were save for the recovery room. Right around 12:30pm, the door to Cujo’s Room opened, and they wheeled him out on a stretcher. We got a smile and a thumbs-up from the staff inside, which is their usual signal for things went well, and everything is fine. We followed the team wheeling him into slot B in the recovery room, where they analyze and monitor his vitals. We started getting the sense that something was wrong. One of the team members said something about “he had colour in his face before the procedure”, then they promptly gave him a mask with oxygen. At the same time, another nurse was hooking up a pulse/blood oxygen sensor on his toe. We saw his pulse on the monitor, and then we saw the pulse go flat. My wife and I looked at each-other for what seemed like minutes. I don’t remember whether I thought it in my head, or whether I asked her aloud, but “what is going on?” was first and forefront in my thoughts. My wife managed to croak “is everything okay, is he alright?”, and the nurses told us that all was fine. I started to feel a panic attack coming on, and I looked around the room for a chair that I would be able to use to sit down. I could feel the blood draining from my head, and my vision started to fade a little. I spoke to myself in my head. I reassured myself that the nurses weren’t at all panicked. No one had called a code blue, and no on was yelling for a doctor, or to start some emergency protocol. I slightly cooled my panic to the point where I probably wasn’t going to pass out. At this time, the nurses had brought in another monitor, and were busy hooking up the sensor, and the cable to it. Still nothing on the second monitor, which bumped my stress levels a bit. They were much closer to E than we were, so they could see he was breathing, but we were further away, and couldn’t really tell what was going on. The original monitor was rebooted, the cable & sensor were tossed, and new ones were brought in and hooked up. At last, there was a pulse on the monitor, and things were reading as they should. Nothing was actually wrong with E, our anxiety and panic had been brought on by a technical problem with the equipment, and/or a sensor and cable failure.

E woke up only half an hour after his procedure was done. They’re supposed to lie flat for an hour so that the methotrexate injected into the spinal fluid had a chance to disperse evenly, and also so the patient doesn’t get a headache. Normally, E wakes early, is still coming out of the anaesthetic, is in a bad mood, and needs to be held down until the hour is up. The other day, for the first time ever, he woke up happy, and was content to lie on his back, eat cookies, drink milk, and watch YouTube.

After the hour was up, E had a quick vincristine push, and we were ready to go. I had to buy a new parking pass, and we had to pick up a couple of prescriptions before we left the hospital, so we weren’t on the road until about 2:20pm. Home around 3:30pm, and my mom was nice enough to have a dinner all planned out for us, thanks!

All in all, an exhausting, and stressful day, especially when you’ve been awake since 3:30am. Viva la Cycle 5, and the start of steroid week....