I don't even know where to start.
The last few weeks have been a little bit more eventful than expected.
Every time I think that I should post an update, something new happens and I put it off, but I think that I had better stop procrastinating and try to give a recap this morning. I'm doing my best to keep family in the loop, but there are lots of people I haven't had a chance to update yet and I don't want anyone to feel left out.
So... Matt started having seizures a few weeks ago (just the vision loss kind, not the grand mal kind) and also had a lot of swelling around his incision. These were both things we were told to watch for so we went to the ER in Owen Sound. They got in touch with London and said both were fine, and that we only needed to be concerned if the incision started leaking.
The next day the incision started leaking, and there were more seizures, so we went back to the ER in Owen Sound. After chatting with doctors in London they started Matt on some antibiotics and some anti-seizure medication and sent us home. The following day we heard from the surgeon in London who asked us to come down for another MRI and an in-person check-up, so off we went to London. He was pleased with both and explained that the scar tissue meant that it was taking a little longer for the incision to heal this time.
On December 14th Matt had the stitches removed by the nurse at our family doctor's office. The next day there was more leaking and another visit to the ER and another round of antibiotics. We had a phone appointment with the surgeon that week and a virtual appointment with Dr. Dave where we discussed chemo options. We decided to go with the same drug that he took in 2018, but this time instead of a high dose for the first five days of every month, it will be a low dose every day for the whole month. This will mean a higher total dose over the span of a month and probably very limited side effects. It's oral so they will just ship the drugs to our house and do blood work locally, so we were grateful to learn it wouldn't mean too much driving or time away from home.
Matt embraced a new daily routine of coffee, Sirius radio, dog walking, and napping and started doing some easy bodyweight workouts and enjoyed some adult skates at the arena too. He continued to have seizures every few days but decided to start calling them "disturbances in the force" because that sounds way cooler and is more fun to discuss.
Christmas morning Matt woke up early and had another disturbance in the force. His neck was sore and he had a headache, but we opened gifts with the kids, drank coffee, and had some breakfast. His headache continued to get worse and his neck wouldn't loosen up despite heat, ice, Tylenol, and a soak in the hot tub. Just after 9:00 am, he agreed to go up to the ER in Owen Sound. It was a quiet morning there and they saw him quickly.
He had a low-grade fever, his pain continued to get worse, he barfed a bunch of times and his head was leaking again. The doctors there were terrific and got in touch with London again. After an X-ray, a CT scan, and more discussion with London, they decided to send him to London in an ambulance around 3:00 pm. The nurse told me that London wasn’t letting visitors into the ER but I drove down anyway and they were kind enough to let me in. We stayed in the ER there until 11:00ish when they admitted him back into the neuro ward in University Hospital. The nurses on the 7th floor were also kind enough to let me stay until after they did some more tests, including a lumbar puncture, and Matt was ready to sleep. I got to Innerkip around 1:00 am, broke into my brother’s place, and ate French toast leftovers from Christmas morning.
When I called early the next morning the nurse told me that Matt had meningitis and that he had been moved to an isolation room. They started him on broad-spectrum IV antibiotics and I was still allowed to go visit him, I just had to wear protective gear when I was in his room. The nice thing about having meningitis (what a weird phrase to type!) is that it means you get your own room. A private room is a rare luxury, is blissfully quiet AND means that I can visit for more than one hour each day.
That morning they made an incision behind his ear to let fluid drain to make sure there wasn't additional pressure on his brain. Matt was pretty uncomfortable yesterday, but much better than the day before. It felt nice to be able to hang out with him, even though he was pretty groggy and quiet. In the late afternoon, they sent him for an X-ray and an MRI to determine if they needed to do another surgery to clean things out. However, it was too painful for Matt to lie down flat so they had to stop after 10 minutes.
That finally brings us to this morning.
Matt called me a few hours ago and we had our first coherent conversation (that lasted more than two minutes) since Christmas morning. It was good to hear him sounding like himself. He said that a resident cleaned his incision this morning, put a few stitches back in, and that it has been dry since then. He also told Matt that there is no surgery scheduled for today, so he is allowed to eat and drink for the first time since Christmas morning! They are trying to get on top of his pain today so that they can do an MRI. That will tell them if surgery is necessary or not.
Now that I've managed to bring everyone up to speed, I will try to do more frequent updates here. I'm so sorry if I haven't had a chance to get in touch with you the last few days. It's been a bit of a whirlwind.
This wasn't really how either of us had hoped to spend our Christmas break, but we're both so grateful that Matt is in good hands here in London.