Woah that was a busy week and I'm still having trouble believing it is September. Eric did almost nothing on Sunday and Monday, as planned. Though we did go to brunch on Monday with some of our friends. It is something we usually do after the first short day of school, but since we weren't able to go on Tuesday, we gathered some friends for a pre-back to school breakfast. Unfortunately, Joel wasn't able to attend because he wasn't feeling well.
Tuesday morning was a bit rough because Eric's procedure was scheduled for 11:15. They wanted us to check in on T3 for the procedure at 9:45, but Eric needed 2 units of platelets on T8 first, so I woke Eric up at 6:30am to get to the clinic by 8am when they opened. Part way through the first bag of platelets, our nurse clinician came and asked if I had heard from the T3 pre-anesthesia clinic because it sounded like Eric had been bumped, but she wasn't able to get a new time and I hadn't heard from them at all. His platelets were running late past the check in time on T3 and I still hadn't heard from them so I decided to call. That is when I learned that there had been an emergency and it went into the OR that Eric was scheduled in. They hadn't called me because they didn't know how long it would be or have a new time. They told me we could finish the platelets upstairs and that Eric was now allowed to have clear fluids until 12:30. This was not good news because they usually like to stop clear fluids 2 hours prior to procedure, so I was thinking maybe 2:30 and Eric had been fasting since the night before. He was not happy.
Once the platelets finished, we figured we may as well check in and wait on T3 and hope for the best. They did end up moving him over to a different OR that had finished early for the day and he got in just before 2pm. The Respirology Fellow came to see us prior to going into the room to get consent and told me they were only doing a bronchoscopy. That is just looking with a small camera. I had been told they were doing a lavage and/or debridement as necessary for any remaining fungal deposits, since he was no longer taking the inhaled anti-fungal. However, she said no, that the plan was only going to look to see how things looked after finishing the treatment with the inhaled anti-fungal. I asked what if you see something in there and she said no, that wasn't the plan and ENT wasn't there anyhow, they are the ones with the tools to do the debridement whereas Respirology only does the lavage. Presumably ENT wasn't there because they weren't invited but I guess that's above my paygrade. Grr! I went in with Eric until he was asleep and they told me the actual procedure would be like 5 minutes. Seriously?!? We got up at 6:30am and fasted until 2pm for 5 minutes and just a quick look!!! I did ask if he was able to eat right away afterward and they said yes so I went and got him a grilled cheese from Starbucks as he had requested. Shortly after, the Respirology team came and got me from the waiting room to let me know what they saw on the bronch. Previously there had been fungal deposits everywhere through his trachea and down toward his lungs and that was all clear now, but there were now 3 larger spots in his trachea.
I went back to the waiting room and the post anesthesia nurses came to get me because Eric was already awake. He always wakes up fast, so that wasn't a surprise, but he was not doing well and that was a surprise. He has had a LOT of anesthesia and never woken up like this. Watching him and trying to comfort him, all I could think was that it was like a bad trip. He was saying why do I feel like this, I don't want this, when will it stop. It was horrible to watch and not be able to do anything. He did go from that to angry, which we have seen before coming out of anesthesia but it hasn't happen in years. Neither of us were prepared for this after having a couple of years of really good wake ups. Also, he wasn't allowed to eat anything!!! They had used a numbing spray so he couldn't eat or drink for an hour. So much for the grilled cheese he'd been promised. After about an hour he was able to calmly watch his iPad and just rest for another hour before we were allowed to leave at 4:30, just in time for traffic.
After that ridiculous day, I knew it was asking a lot for Eric to go to school on Wednesday, but since he's starting a new school this year, we wanted him to get to go with his peers. Technically Tuesday was the first day of school, but they just stood in the field for a half hour and Wednesday was the first full day of school. Luckily Eric had a good sleep and was ready to go to school in the morning. We had found out from his friend where his "team" was supposed to meet so I dropped him off at the school and off he went, so comfortable and confident!
His new school is near the grocery store so I grabbed some groceries and was still home before 9am. After not having been home much myself for the last month I got to putter around the house all by myself all morning and it was amazing! Eric called just before noon and asked to be picked up. He was feeling a bit dizzy, but had a really good morning and was chatting away about the kids he was with that day and the activities they'd done. Unfortunately, he continued to feel dizzy as the day went on and was feeling pretty poorly in the evening.
He had a good sleep, but wasn't feeling well enough to make it to school on Thursday. Luckily they aren't in their actual classes until Monday, so he really isn't missing anything. He spent the day resting while I did more puttering. On Thursday afternoon I was on a call with my counsellor - she lives in Victoria so I meet with her virtually - when I got FOUR calls from the hospital. I wasn't worried because Eric was with me, but I was annoyed! Can't they just leave a message?!?! It turns out that it was both Respirology and ENT calling me and they were madly calling because the ENT had a cancellation on their OR schedule for the following day. Respirology was calling me to let me know I had a couple of options. One is to leave the deposits/plaques and hope they shrink with treatment until the next bronchoscopy which they were planning for the beginning of October. Or, ENT has a cancellation on their schedule so they could go and clean up the plaques on Friday. I told him that I wanted that option and reminded him that I had wanted them removed on Tuesday!!!
The pre-anesthesia clinic didn't call until after 4pm to give us his OR time, which was 1:20pm. Eric was not happy about having to fast until then. We already had a clinic appointment for 10:30am on Friday so they decided to give him 2 units of platelets again since he would actually be having the debridement this time. Unfortunately, it turned out that his hemoglobin was low as well which I had not expected because it had been over 100 at the appointment on Tuesday. There wasn't time to do a blood transfusion before the procedure, and, in order to do it after, Eric would have to recover on T3 for 2 hours and then go back up to T8 and start the blood transfusion in the clinic and then maybe finish it in the ward after clinic closed. However, clinic can't start blood after a certain time and the ward was still full. The clinic doctor ended up calling the head anesthesiologist in the OR and asking if they would be willing to run the blood in the procedure and they agreed! This was the best solution because they can transfuse it quickly in the OR and we didn't have to wait around for extra time. I felt like we were finally catching a much needed break!
On T3, the anesthesia resident came by to chat with us and we both emphatically told him not to do whatever was done on Tuesday. He said he'd read over the notes carefully so that hopefully Eric could have a better wake up. It seemed like everything was on track to be on time, but then it took another 30 minutes for the OR nurse to arrive and then she couldn't find my consent for blood products in the computer. They were now 40 minutes late and Eric was starving and getting very upset, so I called our nurse clinician. She found the blood consent in the computer, printed it and tubed it to T3 so we were finally able to get started. They figured they be about an hour this time. I went to have a 2pm lunch in the cafeteria and then headed back to the waiting room. I was reading my book and falling asleep when the ENT came out to talk to me after maybe an hour and a half. She said it had been more difficult than she had anticipated, but that she got all of the fungal deposits. She showed me a couple (gross) photos of the before and after and it really did look much better, but also very inflamed. She said because it had been more difficult and because his trachea was so inflamed, she wanted us to stay overnight. So much for catching a break with the blood; now that we were staying over, we had lots of time. She had already spoken to Eric's Oncologist and he was okay for us to be admitted to T6, which is the surgical recovery floor. Normally we would go to T8 even after surgery, but they are full. I asked her for an early discharge the following day and she said that wasn't a problem.
Eric woke up much better. We had agreed in advance not to get him food until we knew he could eat, in case they used the numbing spray again, but the procedure had been long enough that he was actually able to eat fairly quickly afterward. He asked for McDonald's hotcakes, so I had them delivered. Thank heaven for all day breakfast. Eric was upset about having to stay overnight, and even more upset that it was T6, but I had packed a bag and brought my mattress topper, just in case. Unfortunately, I couldn't actually use my mattress topper because I got the parent "park bench" and not the parent "bed." It was weird being on T6; I kept getting confused in the elevator and they repeatedly tried to give Eric Tylenol and Advil, which Oncology patients are not allowed. We did not sleep well, no surprise, but the ENT doctor woke us up just before 8am to discharge us. Eric still had to do his meds and have his port de-accessed, but at least we weren't waiting on the doctor. Saturday morning traffic was great and we got home by 10:30 and I was back in bed for a nap by 11:15am.
Saturday afternoon we headed downtown to take part in the Driven Project. It is a charitable organization that provides "supercar therapy" internationally and in the Lower Mainland they have partnered with the BC Lions. Eric and the other kiddos got to ride in one of the supercars through downtown and up to Cypress Mountain and then they swapped cars and rode back through downtown to the Plaza of Nations where we (the families) met them. The kids were escorted across the street and onto the field at BC Place stadium where they watched warm up from the sidelines. Next they formed part of the tunnel on the field that the players run through and then they all stood together for the coin toss. Finally they left the field and were escorted up to a massive suite with kid friendly food - nuggets, pizza, mac & cheese, hot dogs, pop and juice - to watch the game. I was on the field with Eric while Chuck and Joel waited up in the suite. Unfortunately, it was a long wait between the cars and getting up to the suite and Eric was done - and starving! It was almost 7:30 when we finally got up there. We had some food and left at the end of the first quarter. It was too bad we didn't get to watch the game, but Eric was beyond ready to be at home after such a long day and a poor sleep the night before. On the drive home from downtown Eric made plans to spend all of Sunday on the couch watching tv and playing on his iPad.
We did get some great photos and lots posted on the Driven Project and BC Lions social media. Eric rode in a Ford GT and a Lamborghini Revuelto. He told me that he had chosen the 2 fastest cars there. Later someone else told me he'd chosen the 2 most expensive cars there. Eric said the second car was more comfortable than the first one, but he enjoyed chatting with the first driver.
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