2019-09-03

106) August lumbar puncture

Last night, I wrote that August had been the first calendar month where I hadn’t written a post. I was wrong. Previously, in June, I had gone an entire month without posting something. I had been writing in June, but what I had written is unfinished, and sits in my drafts. I’ll try to finish it and post it sometime. It’s not really timely anymore, but I’ll probably finish it for posterity.

On Wednesday August 28th, we travelled to SickKids for E’s 3-month lumbar puncture. I continue to sleep rather poorly, which makes getting up in the morning extra difficult. As usual, we weren’t up as early as we had liked to be, so we were on the road later than I had wanted. Being the last week of August, and the week before Labour Day, the traffic wasn’t too busy. We left at maybe 7:45, took the 401 & the DVP, and made it to SickKids by about 8:45. We made a beeline for the parking level P4 (the lowest, and least busy parking level), and we were up to the 8th floor a bit before 9.

We signed in at the desk, and were taken immediately to the intake room, where E had his weight & height measured, as well as his blood pressure taken. We answered the usual barrage of questions about when he last ate, if he has a fever, his last bowel movement, and if he has a cough, etc. After that we were sent to the recovery room, where E had his port accessed. He was distracted by Rusty Rivets on Treehouse, and he was really good about it this time. Lately, port accesses have involved me putting in something similar to a wrestling immobilizer hold while my wife tries to distract him, and a nurse tries to access him. Like I had said, he was really good about it, they got some blood out of his port to send to the lab, and we were then directed to visit the orange pod to see the oncology team. We were put in a room, and while we didn’t have to wait too long, we had to keep E distracted. He was quite amused by the sink that turns on with hot and cold foot pedals. There also happened to be a doctor’s reflex hammer in the room, and he got a kick out of tapping me on the knee with it. An oncologist we’d never spoken with before came in the room to do a quick exam on E, and to ask us about any questions or concerns. After that, we shuffled back to the waiting room until it was our turn for the lumbar puncture.

If you know E, you know he rarely sits still for long. It’s a children’s hospital, so the waiting room is full of toys. He played with some toys for all of about 5, maybe 10 minutes, but then the urge to run away & explore proved too much, and he was off. My wife and I take turns watching & following him around when he does this. One of us needs to stay with him, and one of us needs to stay in the waiting room to listen to see if we’re called. My wife followed him first & I stayed put, and when he eventually wandered back to the room we switched jobs. E was called for his lumbar puncture procedure around 11:20. We did our usual routine of me carrying him into the room with my wife following. Normally, he wants nothing to do with it; he squirms, kicks, and thrashes to try and get out of my arms while the anesthesiologist does his or her job of dosing him with the medication that puts him under. This time however, he was calm, and just snuggled me while the anesthesiologist connected to his port to deliver the drug. In 10 – 15 seconds he was out, and I placed him down on the gurney where the procedure takes place. My wife & I left to go outside to sit on the bench, and poof, in what seemed like no time at all, the door opened & the wheeled sleeping E out of the procedure room, flashing smiles & thumbs up to let us know that everything went okay.

While he was sleeping in the recovery room, my wife and I alternated running to the ground floor to grab ourselves some food. E usually wakes up screaming & trying to get up after 20 minutes, while we have to try and calm him and keep him laying flat for the remainder of the hour so that the vincristine that was injected into the spinal fluid can disperse evenly and do its job. This time, E ended up sleeping for about 40 minutes, and woke up in a good mood. Because he had to fast for the procedure, he was hungry and was eager for the milk and cookies we had brought for him. In 2 years of lumbar punctures, this was the first time that he had woken up in a relaxed state. It was such a relief to see him that way, and to not have him inconsolably upset.

Before we left, we filled our prescriptions for more dexamethasone (steroid), 6MP, and methotrexate. Little James, whom I had written about last night was in the hospital that day with his mom. We made contact with her, and were able to bring up a bagel so she could have a bit of food and not have to leave her son’s side. We spoke to her in the hallway for a couple of minutes before we were on our way to go home. Seeing the little guy and his mom stirred a number of emotions in me. It was difficult to see how quickly his condition had deteriorated, when just 2.5 weeks earlier he had been finishing his baseball season, and going to Camp Ooch. I’m neither embarrassed, nor too “manly” to admit that I cried during a good chunk of the drive from SickKids to our house.

We arrived home to find my mother, who had come down to help get J off to summer daycare, weeding our garden. She chopped a bunch of peppers, onions, & mushrooms, and we had a really nice dinner of fajitas. I dropped her off at the GO Train, came home, and then fell asleep with J after having read him a bedtime story. The end to a long, tiring, emotional day.

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