Matt was released from the hospital in Owen Sound on Friday and very happy to be back at home. The doctor said that as long as he didn't get a fever and his bloodwork on Monday looked good, he should be able to just continue oral antibiotics at home.
He didn’t have a great weekend. His rash got worse and worse, he had trouble walking on his own, there were some falls, it got harder and harder to eat and drink. There was lots of sleeping, speaking was tough and there was more and more confusion.
He had a blood test Monday morning, then I drove with him to the home care clinic and asked a nurse on duty if she could look at him and tell me that he was ok to still be at home despite my concerns. They said they couldn’t do that and I needed to take him to emerg if I was concerned. Matt refused, so we went home and I was in the process of trying to figure out what to do when a friend of Matt's texted to check in with me because Matt hadn't been replying to his texts. He came over to our house and doled out some tough love, told Matt to put his shoes on and get in the car. He convinced Matt that at the very least he should get some IV fluids to take care of dehydration. Matt was not happy, but he let us help him to the car.
When we got to emerg I expected that I would just have to leave him there like I did last week, but because he couldn’t walk on his own they let me through the doors, and no one told me I had to leave, so I stayed with him.
About 10 minutes after we got there his Owen Sound doctor from last week called with his blood work results and said his white blood cell count was substantially higher than Friday and that his kidneys weren’t happy, so I should take him to emerg. I said we were already there.
Matt didn’t want to get admitted but eventually agreed around 11:00 pm. He had a fever for most of the night and I stayed with him until 5:00 am when they were moving him to a room upstairs. Because of Covid, there are no visitors allowed at the hospital right now, so I wasn't able to stay with him once he left emerg. I had no wallet and no car because I wasn't expecting to be able to stay, so a friend came and picked me up to take me home.
The doctor called for permission as they needed to do each test, because Matt was not coherent and able to provide consent. That morning he would open his eyes, but wasn't speaking or replying to commands. By the afternoon he would respond to commands to open his eyes or move his arms. That night they called to say they were transferring him to London and that I could come see him before he went. He opened his eyes a few times in the hour and a half I was there, but didn't say anything.
He left for London by air late that night and a doctor called at 3:00 am to let me know that he was stable and in the neurology unit. Doctors called Wednesday morning to say they were trying to figure out which symptoms were being caused by a drug reaction and which ones were related to the infection that was still present. He could tell them his name but didn’t know where he was or what the date was.
A physiotherapist and occupational therapist called after lunch to get some additional information from me after their recent assessment of Matt. After introducing themselves, they began with "So Matt told us you live in a 2 1/2 story house..." and I had to interrupt them to confirm that he was speaking. I was very relieved to hear that he had been able to answer questions about how many kids we have, where I work, who has been managing medication, who is doing the housework, etc. This felt like the first good news in a really long time.
Wednesday night London called to say that he was scheduled for surgery Thursday afternoon to try and clear up the infection in his brain, but Thursday morning they called to tell me he was no longer stable enough for surgery. He had acute kidney dysfunction, liver dysfunction, low platelets, low blood pressure, high heart rate, and his blood wasn't clotting like it should. They were working to figure out what had caused the sudden change and took him off all medication, except for one antibiotic, to try and figure out if these new symptoms were caused by a drug reaction or something else. They said they had given him a blood transfusion and lots of IV fluids and would call back with updates.
That afternoon a doctor called to fill out some paperwork and told me that Matt had shown some improvement and was sitting up and able to talk. When I got off the phone with him, I immediately called the nurse's station in Matt's room to confirm that he was still alert and coherent. They said he was and I asked if they would help him answer his phone if I FaceTimed right then. I am so grateful they agreed because Matt and I were able to have a real 5 minute conversation - our first since Monday. He told me that the nurses were taking good care of him, that he wasn't in pain, that his mouth was dry and his tongue was making it hard to talk. He stroked his beard lots as we chatted and said that his rash was starting to improve. He looked infinitely better than he did when I saw him last on Tuesday. He was tired and his speech was a little bit difficult to understand, but it was so relieving and encouraging to see his face and hear his voice.
There haven't been any updates so far today. The social worker facilitated a virtual visit again this morning for me, but Matt wasn't quite as coherent as yesterday. He was able to answer a few questions, but was tired and ready to sleep after the first minute of the call. The social worker tried to get an exemption to the visitor policy, but didn't have any luck. It's so hard not to be with him, but the fact they didn't grant the exemption actually makes me feel a little bit better about his status right now. I'm hoping the policy might change soon.
The kids and I are still at home in Owen Sound. We're surrounded by lots of love and support. I really appreciate all of the kind messages, and helpful gestures and I hope you'll all forgive me for being slow to update this blog. It's been a roller coaster of a week.
