The next morning, Saturday, Danny and Sharon came back to the hospital, and then Danny stayed with Matt while Sharon and I went back to the hotel for me to shower, which felt wonderful! The cardiologist – of course – came to see Matt while I was gone, but Danny called and put me on speaker phone so I could be part of the conversation. They didn’t really discuss much…except that Matt still didn’t remember his heart cath or the “before” and “after” pictures I’d shown him multiple times, so the cardiologist sweetly discussed them with him.
It wasn’t long after we got back that the nurse told us they were going to transition him to the regular floor – they needed his bed in the CTICU, and he was doing well enough to be moved. It took a while to get moved and settled in the new room, but one of the bonuses of that was that it would be easy for the kids to come see Matt! The policy in the CTICU had been no visitors under the age of 16, though one of Matt’s nurses told me that it was really my call, but when he was unconscious and intubated, I really didn’t think it would be a good idea for them to come back and see him. Once he was just on oxygen, though, it was a much better situation. Matt’s mom and step-dad brought the kids out that day, and Danny and Sharon took them to Chuck E Cheese for the afternoon, and Matt’s mom and step-dad, as well as Matt’s cousin Chris and his wife Julie, were able to come and visit that afternoon. Matt was beginning to get a little bit more lucid, though his short-term memory was still lacking, and he was still very tired.
And after the Chuck E Cheese trip, Danny and Sharon brought the kids up to see Matt and me – it was always such a relief to see them, to get to nurse and snuggle Atticus, to get to talk with the girls and see how they were doing. Then Matt’s mom and step-dad took them home for the night, and Danny and Sharon and Matt and I hung out. It was good to have their company for those hospital hours. Being able to enjoy fun conversation and laugh was a blessing in the midst of all the drama.
We were able to find a recliner for me to have in that room, so again, I was able to spend the night right with Matt. That was definitely helpful, because while he’d had a 1:1 ratio with his nurse in the ICU, the nurses on the main floor were stretched much thinner. A nurse or a tech usually came reasonably quickly when we’d push the call button, but Matt didn’t always remember that he still needed help to get out of bed and walk to the bathroom or that he needed to take his oxygen with him, and I was able to remind him of those things and help him with whatever he needed – most of the time. Early that morning while I was asleep, apparently his oxygen was bothering him, so he took it off, and his oxygen saturation level dropped to 68 (it’s supposed to be at least 92)!
They did a chest x-ray later that morning and confirmed that he had in fact developed full blown pneumonia, which meant that even though cardiology was saying he looked really good, the pneumonia would keep him in the hospital for another few days, potentially another week. Both of us were really hoping it wouldn’t be as long as a week – hospital life was getting pretty old. And while Danny and Sharon were able to stop by and visit again that morning, they needed to head back to Washington, D.C. to be at work Monday morning. We talked about having my mom or someone come out, but knowing that he might be discharged within a few days, and we’d probably need some help when we got home, we thought it might be better to wait and have her come to Missouri once we got home.
Stacey was able to come and visit again Sunday afternoon, and it was good to see her again and for her to get to see Matt feeling somewhat better than on Friday. And Matt’s cousin Chris and his wife Julie and their little guy stopped by for a while, too. Matt was still very tired, though, and was both encouraged and exhausted by visitors, so he actually fell asleep while they were there.
On Monday the electrophysiologist stopped by and talked with us and said they were going to discharge Matt with the life vest (the wearable defibrillator), just as a precaution, but given that Matt had stayed in a normal sinus rhythm the entire time he was in the hospital, he did not think it super likely that his cardiac issues were primarily electrical in nature. And the cardiology people were still saying he looked good. He was still on quite a bit of oxygen, though, because of his pneumonia, but respiratory started to wean him down.
And with his move to the main floor, Matt had started getting visits from PT and OT. I was really impressed by how they handled everything – their goal was to make sure Matt had all the resources he’d need in order to transition home once he was discharged, so they talked with us fairly extensively about what the set-up would be at Matt’s mom’s house and then at the place we’d stay between New York and Missouri and then once home to make sure that he’d be able to use the bathroom, do as many stairs as he’d need to be able to do, etc.
That afternoon Matt’s mom and step-dad brought our kids for another visit, and while Matt did PT, we went down to the cafeteria and had lunch, and then we colored and played in the room. It was at that visit that we really started to see the strain all of this was having on our kids. Not only had they witnessed Matt’s heart attack, but they were now unexpectedly separated from us for what was feeling like quite a long time to them. I really felt like I still needed to be with Matt, but it was really hard for me to send them back to his mom’s that evening when they left. Matt was frustrated that he still needed to be in the hospital, and I was torn and feeling pulled in every direction.
We were both restless. It was hard, knowing that Matt still really needed to be in the hospital, but our kids also really needed us to get back to them as soon as we reasonably could. On Tuesday we started pressing people for more discharge info. It seemed like the major barriers to discharge were getting Matt onto all oral meds instead of IV meds and getting him down to breathing room air instead of needing extra oxygen, so with each team that came in, we pushed to move toward those things.
And we agreed that he was doing well enough that I should go back and spend the night with the kids that night. It was so hard leaving him – I liked being able to take care of him and being there to ask questions and make sure we understood everything, and of course I enjoy spending time with him. And Matt was pretty sad being on his own. Fortunately our missional community group from church meets on Tuesday nights, so they were able to FaceTime with him and pray for him, and my mom called and read Harry Potter to him for a while, and his mom had brought him some art supplies, so he was able to stay pretty occupied.
And all of our kids were emotional and needed us to be with them as soon as we could, so it was good for me to be back with them. It was good to snuggle into bed with the girls and read to them. And it was good to hold Atticus as he settled down to sleep. I really felt for my sweet kiddos and was glad we were moving toward all being together again as a family.
The next morning I headed back to Utica to be with Matt in the hospital, though. It was hard to leave the kids that morning, but I was glad I got there when I did, because cardiology had visited Matt just before I arrived, and I had more questions for them, and I was able to catch the cardiology PA in the hall. Matt’s forearm had gotten swollen, and they’d done an ultrasound the day before and discovered a clot, so they’d started him on an additional blood thinner, but no one seemed very concerned, and I was able to ask questions to understand more about that.
Other than that, though, we were really just waiting for the different doctors to visit and approve a discharge. Everyone except Matt’s hospitalist/pulmonologist, who was his admitting doctor, had signed off by about 2:00 p.m., and we were just waiting for him to come, so we could talk with him. Sunday and Monday he’d woken us up, coming early in the morning. Tuesday he’d come around 4:30, and Wednesday it got to be 5:00 and then 6:00, and he still hadn’t come. Everyone was pretty optimistic that he’d sign off on discharge, though – cardiology had been fine with it for days, and we’d gotten Matt onto oral antibiotics and breathing room air, and there didn’t seem to be any reason for us to be in the hospital. We went ahead and ate dinner, and we packed up all our stuff, and I even took a load of things out to the car and moved the car closer so we’d be able to get Matt out to it when we did leave. As it approached 7:30 and then 8:00, I started to get nervous – I’d stayed, thinking Matt would be discharged, but now it was getting to be bedtime, and I wasn’t back with the kids, and I didn’t want to leave, because Matt would likely be discharged at any moment, but I had also told the kids I’d be back that night, and I knew they’d be getting anxious.
At one point Matt’s night nurse came in and said something about how we shouldn’t get our hopes up, because he might not be discharged that night, and I got somewhat emotional. I told her that we’d met every goal everyone had had for his discharge, and our kids were little and had been through a week of trauma, and we needed to go. And I understood that it’s not our call, but we wanted to do everything we could to make it happen, and everyone all day had been saying that they expected it to happen that day. The remainder of the conversation I had with her was the only time I ever felt patronized during our entire hospital experience – she clearly thought I was being overly emotional. Ultimately, though, she agreed to have the charge nurse find out if there was even anyone in the hospital that night who could remove a PICC line (thankfully there was), and they called the doctor again.
Finally around 8:30 the doctor came. He said that we could stay another night and do a sleep study to see if Matt had sleep apnea, but neither of us saw much reason to do that right at that moment – if Matt’s doctors back home thought it was warranted, we could do it there, but why spend another night in the hospital in these circumstances? Then he said we could go if we wanted to go. Hallelujah! YES, we wanted to go!
It still took a while – Matt’s PICC line had to be removed, all the discharge paperwork had to be done, they had to give us all of Matt’s prescriptions, etc. However, we got to leave! We were both thrilled.
It was a bit of a harrowing drive back to Matt’s parents’ house – an hour through darkness and fog on unfamiliar roads – but we made it 🙂 We got to see our kids, rest, and actually go to bed together without looking forward to the 4:00 a.m. wake-up for labs. It was glorious.
Not that everything was magically perfect just because we were out of the hospital, of course – Matt was still exhausted, and all of our kids wanted to be with me every minute of every day. And the first day out of the hospital, it took me 6.5 hours, about 12 phone calls, and 3 trips to the pharmacy to get the 6 prescriptions Matt needed for those first days after he was discharged. But it was nice to be out and back at Matt’s mom’s house. We all got to be together, we got to see the rest of our family, and Matt got to rest and heal without being interrupted for lab work every 4 hours. That’s really what we focused on during those remaining days in New York. As an added bonus, we got to go to our niece Averie’s birthday party. And it was really nice to get that extra time with Matt’s side of the family, though we never would have asked for the circumstances that caused it.
We were looking forward to getting home, though. Our church generously offered to fly out one of our friends for #operationbringbackballou. Bobby arrived Monday night, and Tuesday morning we packed up and began the long drive back. For the most part, Bobby drove, Matt rested, and I parented.
My brother David graciously hosted us in Cincinnati Tuesday night, and we made it back to Columbia on Wednesday. It was so good to be home. And we were overwhelmed with gratitude immediately upon walking into our house – we’d left everything in total disarray, as we’d had to depart just 24 hours after learning of Matt’s sister’s death, but friends of ours had come in, done our laundry, and cleaned up for us, and they stocked us with the fresh groceries we’d need to make it through our first couple days home, and my dad met us at our house to be with us for those first couple days home – grace upon grace. And shored up by that grace, we began the journey of figuring out what our new normal would look like.