It's incredible how the passage of time can be perceived so differently depending on your circumstances. When you're doing something enjoyable the time can fly, when you're bored it really drags, and when you're under pressure it can feel like it has come to a complete standstill. Waiting for James surgery really did feel like time had slowed right down. It felt like Edmonton was never going to arrive. But with each day that passed we became more acutely aware of the fact that this surgery was definitely necessary.
James was slowing down. He was still as happy as ever, but was needing more naps and it seemed like the cyanosis and episodes of spacing out were increasing. Still no sign of those "red flags" but I was tracking his behaviour as I had been told. Aside from these symptoms he seemed to be doing really well! He was rolling over, discovered mobility by pushing into the ground with his heels to scootch on his back or trying to commando crawl/arm-bar on his front, and cut his first two teeth (he's only 5 months old! How does he have two teeth already?!). But then last Friday, less than a week away from our trip to Edmonton things got a little more complicated.
James was slowing down. He was still as happy as ever, but was needing more naps and it seemed like the cyanosis and episodes of spacing out were increasing. Still no sign of those "red flags" but I was tracking his behaviour as I had been told. Aside from these symptoms he seemed to be doing really well! He was rolling over, discovered mobility by pushing into the ground with his heels to scootch on his back or trying to commando crawl/arm-bar on his front, and cut his first two teeth (he's only 5 months old! How does he have two teeth already?!). But then last Friday, less than a week away from our trip to Edmonton things got a little more complicated.
Children's Emergency
It was Friday morning and we were playing in James room as we often do in the mornings. James began to space out so I tried to distract him, see if I could snap him out of it. I tried talking to him, making sounds, moving his favourite toys in front of him... I don't normally poke at him when he does this but for some reason I felt the urge to play with his hands. I picked up his arm but when I let go it flopped down, completely limp. I don't know how I knew, but somehow I just knew he felt different this time. I tried his other arm - same thing. Both legs - limp. His lips weren't blue but he'd never gone limp before. After about 5 minutes he came out of it. He seemed lethargic, kind of sleepy, but after 15 minutes was back to his normal self. Because the limpness wasn't in combination with any other symptoms I just wrote it down in my notebook and left it at that.
Later that afternoon my mom and I had planned on going for a run. But since their AC installation took longer than expected we decided to just go for a walk instead since Chris and I were going to meet with our friend Nick to look at a some exciting stuff we may end up doing in the near-ish future (more on that later when things are more finalized). When she arrived I mentioned the limpness we had experienced that morning and she suggested that I email cardiology. I didn't want to seem like a crazy person but I figured it wouldn't hurt for cardiology to add it to his record. As we were locking up the house for our walk I got a call from our case nurse. She had consulted with our cardiologist and they agreed that this needed attention. They told us it was time to take him to Children's Emergency. She said even if he wasn't experiencing the symptoms while we were there, because he's a cardiac patient, and pre-op, he needed to be checked out.
It was Friday morning and we were playing in James room as we often do in the mornings. James began to space out so I tried to distract him, see if I could snap him out of it. I tried talking to him, making sounds, moving his favourite toys in front of him... I don't normally poke at him when he does this but for some reason I felt the urge to play with his hands. I picked up his arm but when I let go it flopped down, completely limp. I don't know how I knew, but somehow I just knew he felt different this time. I tried his other arm - same thing. Both legs - limp. His lips weren't blue but he'd never gone limp before. After about 5 minutes he came out of it. He seemed lethargic, kind of sleepy, but after 15 minutes was back to his normal self. Because the limpness wasn't in combination with any other symptoms I just wrote it down in my notebook and left it at that.
Later that afternoon my mom and I had planned on going for a run. But since their AC installation took longer than expected we decided to just go for a walk instead since Chris and I were going to meet with our friend Nick to look at a some exciting stuff we may end up doing in the near-ish future (more on that later when things are more finalized). When she arrived I mentioned the limpness we had experienced that morning and she suggested that I email cardiology. I didn't want to seem like a crazy person but I figured it wouldn't hurt for cardiology to add it to his record. As we were locking up the house for our walk I got a call from our case nurse. She had consulted with our cardiologist and they agreed that this needed attention. They told us it was time to take him to Children's Emergency. She said even if he wasn't experiencing the symptoms while we were there, because he's a cardiac patient, and pre-op, he needed to be checked out.
This is definitely not the way I expected to start our last weekend before surgery, but that's life. I called Chris and he met us at the hospital. We got into emergency and our cardiologist was already there waiting for us. After going through triage and registering with the front desk we were off to cardiology for an emergency echocardiogram. What surprised us was that while the narrowing of the pulmonary artery had progressed again, it didn't seem to be the source of his problem... from a clinical perspective, it sounded like James was experiences Absence Seizures. With surgery in less than a week, they didn't want to wait 6 months for us to see neurology via outpatient. Instead, they admitted us (after 10 hours of waiting in ER for a bed to open up) to the PICU, which for the record, is incredible! They had all the parent care that we had missed in NICU and was over all an incredibly positive experience. Obviously, we didn't feel he needed intensive care, and after several hours of monitoring his vitals, neither did the medical team. But we needed to remain admitted to ensure that we were seen by neurology. Of course it was now Saturday and the staff wouldn't be in over the weekend, so we got special permission to be sent home on a pass until Monday morning.
Neurology
The weekend was uneventful as we had anticipated, and James didn't have any other seizure-like symptoms. So Monday morning we headed back to the PICU to make sure we were there on time for rounds and our appointment with neuro sciences. Once we got the go-ahead from the PICU staff we were taken down to neurology for an EEG. The took James to get set up and my mom and I were taken to what I call the "bad news room". The hospital has a few rooms that are cozy, much nicer than a lot of the other rooms in the hospital, with comfy couches, and tissue boxes on the end tables. Fortunately we're very good at handling bad news at this point and it didn't even really seem like bad news. Seizure disorders are not uncommon in young children and often they out-grow them before adulthood. Often the trigger is unknown but we were advised that somethings they are just a neurological reaction to extreme physical stress - such as heart surgery. We were told what to look for, how to respond, when to call in to neurology to update their record of his symptoms, and when to come back to the ER.
After the meeting we were asked to wait in the hall until James test was done. But James decided to be a little grump monster and didn't want to settle down for the EEG. The cool thing about this was that it meant I was able to go in and be with him for the entire test! It was kind of creepy really. He was swaddled up so he was basically in a baby straight-jacket and had over 20 electrodes attached to his head. But it was neat to see his brain activity on the screen. Most of the test was just monitoring him in a relaxed state (half sleeping, half eating) and then at the end they had a 5 minute strobe light test where they flashed a light at him in increasingly faster intervals until it was basically like a flickering florescent bulb that's on but gives you a headache.
The weekend was uneventful as we had anticipated, and James didn't have any other seizure-like symptoms. So Monday morning we headed back to the PICU to make sure we were there on time for rounds and our appointment with neuro sciences. Once we got the go-ahead from the PICU staff we were taken down to neurology for an EEG. The took James to get set up and my mom and I were taken to what I call the "bad news room". The hospital has a few rooms that are cozy, much nicer than a lot of the other rooms in the hospital, with comfy couches, and tissue boxes on the end tables. Fortunately we're very good at handling bad news at this point and it didn't even really seem like bad news. Seizure disorders are not uncommon in young children and often they out-grow them before adulthood. Often the trigger is unknown but we were advised that somethings they are just a neurological reaction to extreme physical stress - such as heart surgery. We were told what to look for, how to respond, when to call in to neurology to update their record of his symptoms, and when to come back to the ER.
After the meeting we were asked to wait in the hall until James test was done. But James decided to be a little grump monster and didn't want to settle down for the EEG. The cool thing about this was that it meant I was able to go in and be with him for the entire test! It was kind of creepy really. He was swaddled up so he was basically in a baby straight-jacket and had over 20 electrodes attached to his head. But it was neat to see his brain activity on the screen. Most of the test was just monitoring him in a relaxed state (half sleeping, half eating) and then at the end they had a 5 minute strobe light test where they flashed a light at him in increasingly faster intervals until it was basically like a flickering florescent bulb that's on but gives you a headache.
Results
Once the EEG was done we waited in the hall for results. Because we were an unusual case, the PICU had discharged us too soon and the In-Patient neurologist wasn't able to give us our results, but for the sake of time looked at the data and gave the results to the Out-Patient neurologist who came to tell us the news. Clinically, he was exhibiting all the symptoms of absence seizure. The EEG only tells you whether his brain is predisposed to seizure and can capture evidence of a seizure IF it happens while he's hooked up. He didn't have one while being tested, which is excellent, and we also learned that his brain is NOT predisposed to seizure disorder. This is not to say he hasn't been having seizures, but it does make it more likely that they are caused by the physical stress he's experiencing with his heart.
With the glimmer of good news in our eyes we headed home to pack for our flight to Edmonton on Tuesday. On to the next part of the journey.
Once the EEG was done we waited in the hall for results. Because we were an unusual case, the PICU had discharged us too soon and the In-Patient neurologist wasn't able to give us our results, but for the sake of time looked at the data and gave the results to the Out-Patient neurologist who came to tell us the news. Clinically, he was exhibiting all the symptoms of absence seizure. The EEG only tells you whether his brain is predisposed to seizure and can capture evidence of a seizure IF it happens while he's hooked up. He didn't have one while being tested, which is excellent, and we also learned that his brain is NOT predisposed to seizure disorder. This is not to say he hasn't been having seizures, but it does make it more likely that they are caused by the physical stress he's experiencing with his heart.
With the glimmer of good news in our eyes we headed home to pack for our flight to Edmonton on Tuesday. On to the next part of the journey.