I've tried several times over the past two weeks to sit down and write a new post to bring everyone up to date. But each time I've tried, I've been a bit overwhelmed, for a variety of reasons, and can't seem to find a place to start. For a while there, things were pretty bad. I had a hard time talking about it with friends and family, and the idea of trying to find the right words for a public audience seemed next to impossible. As Matt's status was changing daily, sometimes hourly, the sheer volume of information that I had to share also seemed overwhelming. I know that I can't possibly give a detailed account of the past two weeks, so I'm just going to do my best to let everyone know where Matt is at now, which thankfully is quite different from his status when I wrote the last post.
Since I last posted, I was granted an "Essential Visitor" pass in London and was able to visit him for an hour each day on February 3rd, 4th, 6th, and 7th. He was still quite confused and very tired, but it was so nice to be able to sit with him, to meet the people who were taking care of him, and to get a little bit more information when asking questions in person. Although I had been getting updates by phone, it was hard to see Matt in such a different condition than the last time we were together. Matt was eating very little and so they inserted a temporary feeding tube. They explained that his liver needed protein to recover and this would supplement whatever they could convince him to eat. For a few days he was eating and drinking almost nothing, so this ended up being essential to his recovery.
I learned a bit more about DRESS (Drug Reaction with Eosinophilia and Systemic Symptoms) which had caused the kidney and liver failure and sudden decline in his condition. They told me that the severe reaction he had is something they might see once a decade in London and that they were still working to determine which drug had caused it. I asked if he was progressing as they expected and they explained that even a few days prior they really hadn't been sure what to expect. Matt's liver was in such a bad state that under different circumstances he would have received a liver transplant, but the Glioblastoma meant that he was ineligible and they had to treat him with steroids instead. They assured me that even though he was very sick right now - essentially sleeping all day, on oxygen and a feeding tube - that they felt that he was moving in the right direction and that his coherence, his energy, and his eating would start improving as his liver got healthier.
On February 8th I got a phone call from an administrator who had the unfortunate job of telling me that the visitor pass had been granted due to a clerical error and that it was being revoked. Their no visitor policy has only two exceptions, and Matt did not meet the criteria for either of them, so I would no longer be able to visit him. By this point, Matt's kidneys were back online, his liver was beginning to show small improvements, and the meningitis was officially gone, so London had begun the paperwork to have him transferred to Owen Sound to continue his treatment closer to home. He was still unable to sit up in bed unassisted and was still incoherent most of the time, but aware enough to know that he didn't want to be in the hospital.
On February 11th, Matt called me for the first time and asked me to come to London to pick him up. This was a big deal because up until this point, any time that we spoke on the phone or had a video chat, I had to get the nurses to help him answer his phone so that we could connect. Usually, our conversations lasted only a few minutes before Matt needed to sleep again. So it was great to see that Matt had improved enough to do this, but tough to know that he was coherent enough to be upset that he was by himself and missing home. I called the patient care manager that morning for an update on the transfer process and was so happy when she called back later that day to say that he would be leaving London at 10:00 pm that night to come to the Owen Sound Regional Hospital.
When I called the hospital Saturday morning to get an update, the nurse told me that he had ripped out his feeding tube when he arrived and refused to let them reinsert it. He told them he didn't need it anymore and that he would just eat himself. I realize that this probably wasn't the ideal way to shift back to eating food, and definitely made the nurses nervous, but I was secretly relieved to see Matt being stubborn and a little bit difficult.
Owen Sound had just changed its visitor policy the day before to allow visitors again. Each patient is allowed two visitors between 1:00 and 6:30 every day, but they must be the same two visitors for the entire duration of their stay at the hospital. Matt's mom and I were the two names that we had planned to put on the list, but on Saturday morning when I asked the nurse about the process for doing this she informed me that Matt could not have any visitors because he had COVID. I explained that I was a little confused because he didn't have COVID at 10:00 pm the night before when he left London but she said that he had a positive test when he arrived in Owen Sound. I tried to explain that it was their hospital that had discovered he had COVID on January 9th, and that he had been declared "COVID resolved" when he was discharged from the same ward that he was in right now on January 21st, but these things didn't matter. She agreed that she thought he probably did not have COVID again but she didn't have the authority to make the changes on his file. Infectious Diseases would need to sign off on it before Matt was allowed to have any visitors, and they wouldn't be in until Monday. I could appeal the decision with the patient care manager, who also wouldn't be in until Monday. So close to getting to see him, but not quite close enough yet.
Monday morning, I got the call that he had been cleared for visitors, and it was so great to be able to see him again that afternoon. He told me that the nurses were giving him a hard time about not having a Valentine's Day present for me, but just being able to see him, and having him be well enough that we could actually talk, was the best Valentine's Day gift ever. I couldn't believe how much he had improved in less than a week and it was so encouraging. The fluid in his arms and legs had gone down significantly, his coherence had improved a lot and he was able to stay awake for the entire two and a half hours I was there. His liver isn't quite where it needs to be yet, but continues to improve. His rash is gone and most of the peeling skin has come off too. London told me that they were concerned about him getting pneumonia as it is a common side effect of high doses of steroids, and a chest x-ray when he arrived in Owen Sound confirmed that he does have pneumonia, so he is on antibiotics to help clear that up.
The focus for him right now is getting rid of the pneumonia, waiting for his liver to continue to recover, and regaining strength and mobility. He is still quite tired and sometimes a little confused. He has lost 30 pounds since the end of January and is feeling weak from being in bed for so long, but he is eager to get home and is working hard to eat more and move more.
