Spring Break Excitement…Or Not

You may be wondering what a family of six that is saving money for a fun summer trip (as well as continuing to rebuild the emergency savings account that was wiped out with the last adoption!) chooses to do for spring break. It turns out…not much. Well, that’s not exactly true. We’ve been doing a lot – it’s just that none of it is particularly exciting.

In fact, with the exception of a blissful 36 hours in which everyone in our home was fever-free, we have had at least one sick child every day for the last 11 days. We’ve had runny noses, coughs, and fevers, and yesterday we added a confirmed ear infection to the litany of afflictions. The downside of having a lot of children is that illnesses can slowly make their way through them, one at a time, rendering at least portions of the family home-bound for long periods of time. We’re thankful it’s not worse, but this is getting pretty old!

In a way, it’s been nice that the weather has been so yucky – 40s, maybe 50, cloudy, rainy, and muddy. At least we haven’t felt like we’re missing out on much! Even though this week is Matt’s spring break, the kids and I are plugging away at school. We may as well do school now, when weather is yucky and everyone feels bad, so we have more time to enjoy the fun, warm, sunny days when they arrive.

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We also have a number of medical needs in our family, and poor Matt is at my mercy this week, as I’ve scheduled as many appointments and meetings as possible to try to avoid having to drag all 4 children to everything. So far we’ve tackled an eye doctor appointment for one child, a meeting about access to our church’s children’s programs for one of our kids, an unexpected pediatrician appointment to confirm the ear infection, a cardiology appointment for Matt, and we tried to do an endocrinology appointment for two of our kids…but, for the first time (which actually might be impressive, given the number of appointments we have? or maybe it’s still just depressing) I had the day wrong, and they told us our appointment is actually tomorrow. Sigh. Tonight I’ll meet with another adoptive mom to talk some adoption stuff, and tomorrow we’ll do the actual endocrinology appointment and hit a physical therapy appointment. It’s all stuff that needs to be done…but it’s not exactly Disneyworld 😉

I am thankful that we live in an era in which medical care is readily available. I’m thankful for our high quality health insurance that allows us to pursue that care without worry. It has not escaped my notice that not everyone has that right. My child who woke up with an ear infection doesn’t have to suffer longer than necessary. And since we need to take care of all of these specialist appointments, it is so nice to be able to do it during a week when Matt is around. This is part of what life with a medically complex child and others affected by various medical issues is all about. We knock out the appointments, do some school around them all, and try to get in some bits of family fun, as well <3

I hope your spring break is more exciting than ours – but also that if you are a family who has weeks like this, filled with a never-ending stream of appointments, that you can see the grace in the ability to do that, too.

the heart attack (part four: New York)

You can check out parts one, two, and three of our heart attack saga if you haven’t already.

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.

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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.

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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.

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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.

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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.

The Heart Attack (Part Three: Utica ICU)

You may want to check out part one and part two if you haven’t already!

When we got to St. Elizabeth’s in Utica, we were taken right up to the Cardio-Thoracic ICU. Again I had to wait in the waiting area while they got Matt settled. Matt’s sister Stacey arrived while I was waiting – it was so good to see her and have her with me. And as a bonus, she brought me a change of clothes and a hair brush, both of which I’d been without since Wednesday night. We were able to see Matt just briefly before the nursing shift change, at which point they asked us to step out, and the night nurse said she’d let us know when she was ready for us, about half an hour. I was not pleased at being asked to step out – I felt like I was the one constant throughout all these changes in location and caregivers, and I knew the story and could potentially even fill in missing gaps, and I’d sit quietly off to the side and wouldn’t get in the way, but I wanted to be there. I left as requested, though. It seemed like every time there was a new nurse, I had to start all over with proving that I would not be obnoxious and might even be helpful at times.

Stacey and I sat in the waiting room, and soon their cousin Sarah came back to be with us, also bringing dinner for me, because unbeknownst to us, the cafeteria at that hospital closed at 6:30. Thirty minutes went by, then an hour, and we still hadn’t heard from Matt’s nurse that we could come back, and I was getting increasingly nervous and irritated. Finally after an hour and a half had passed, another nurse came in, and I told her I was waiting to be able to go back in to be with my husband, and he’d had a heart attack yesterday, and his nurse had said 30 minutes, and now it had been an hour and a half, and no one was telling me why, and I was getting worried. She said she’d go check for us, and a couple minutes later Matt’s nurse came out and apologized and said we could come back. She said she had some nursing students that night, and she’d lost track of the time. It was a relief to see him when we got back. He had transferred over pretty heavily sedated, because he’d seem uncomfortable any time the sedation turned down, but she was already turning the sedation down a bit, and he seemed more comfortable than he had before. It was clear that the people in the CTICU had experience working with cardiac patients who needed a lot of care – they had a lot of protocols for how thin Matt’s blood should be, turning him every 2 hours, having him wearing compression socks, etc.

After my initial misgivings, I decided I did appreciate the expertise of this nurse, and she turned out to be really nice to me. She got me some blankets and a pillow and set me up in a quiet room just off the waiting room for me to sleep that night. This was now Thursday night, and I hadn’t slept at all since Tuesday night, but it was still hard to sleep. I’d close my eyes, and immediately my thoughts would return to Matt having his heart attack in the hotel room. I knew I was starting to get a little loopy though, and my body really needed the rest. Eventually I drifted off to sleep around 1:00 am and slept for about 2 hours, then laid there for an hour or so, reminding myself that Matt’s nurse had promised to come and get me if anything changed, and that must mean things were okay. I slept again from about 4:00 to 6:00 and then was awakened by Matt’s nurse. She said everything was fine, but she’d been gradually turning his sedation down throughout the night, and he was starting to wake up, and she wondered if I wanted to come see him. Of course I did! He was still pretty out of it, but it was good to see him half-awake and able to move around a bit.

That morning I signed consent for a PICC line to be placed – Matt had a lot of IV sites, all of which would expire after 4 days, and he was constantly being poked for blood draws, and the PICC line would eliminate the need for all of those. A nurse from the cath lab also came up to explain the procedure to me in detail and get my consent, and she also got me the forms to request all the images from the cath and to request all of Matt’s medical records upon discharge. After we’d done all the paperwork, I asked her if she thought they were going to do the cath that day – the day before, they’d said initially that he’d go straight to the cath lab upon arrival, but then they’d gone back on that and said it would be the next day or potentially even later, depending on his vitals and temperature. She said she thought it would be that day, but she called down to the lab to see if she could find out morning or afternoon, and they said actually they were all ready to go, but no patients were ready, and if he could go now, he could come right down. That was practically the only time in the hospital that things actually moved fast – they got him ready, and we went right down!

Danny and Sharon had arrived in the night, and they were waiting for us in the cath lab waiting area, so they got to see Matt for a few seconds before he went in. Then they and I went and got some breakfast in the cafeteria – I got apple pie, because I figured that if my husband had had a heart attack, I was allowed to have apple pie for breakfast, and Danny and Sharon agreed 🙂 They waited with me through the cath, and Matt’s sister Stacey arrived while we were waiting, too. And actually my friend Tammy’s sister-in-law’s sister lived nearby, so Tammy asked her and her family to stop by and bring us a small gift and pray for me, which they did.

And it really wasn’t long before Matt’s cardiologist came out. He said that most of Matt’s arteries looked good, but they’d found a blockage – in fact it was a 100% occlusion – in an artery, and they’d placed a stent. He brought pictures to show me of what the blood flow looked like before the stent was placed and afterwards. He said he expected that Matt would make a full recovery – that he needed to lose weight and get into a regular exercise regimen and change his diet, but he thought he’d be fine. Those were encouraging words to hear!

We went back upstairs to the ICU and were able to see Matt again. He was still fairly heavily sedated, but with the cath behind him and the stent placed, the plan was to wean him from the sedation and then allow him to try breathing on his own, which would allow him to be extubated. Danny and Sharon were able to see him again, and then they took off and headed for Camden to pick up our kids and bring them out for a visit. Our friend Dan and his father also stopped by again for another brief visit, and then Stacey and I were there with Matt for the afternoon.

We talked with the electrophysiologist when he came by that afternoon, a visit that left me more worried than my conversations with the cardiologist that morning. When I’d spoken to the cardiologist, he’d said they’d found the blockage and expected Matt to be fine, but he came back that afternoon and said he’d called in the electrophysiologist to consult just to make sure everything was covered. The electrical event with Matt’s heart could have been secondary to the structural blockage, but sometimes electrical events are truly primarily electrical in nature. The electrophysiologist was somewhat alarmed by the combination of Matt’s sister having passed away unexpectedly at a young age a few days prior and the blockage that was found not being in one of the most major arteries and the fact that we’d be traveling back across the country fairly soon after discharge. He said it really was most likely that Matt’s heart attack was primarily structural in nature, but electrical stuff is harder to pin down, and they’d monitor Matt’s heart rhythms over the next few days, and he might recommend that Matt be discharged with a life vest – essentially a wearable defibrillator. Just the possibility of any sort of uncertainty was alarming to me, but everyone still seemed to think this situation was probably pretty straightforward.

Stacey and I were able to hold Matt’s hands as he began to wake up, explaining over and over again that he’d had a heart attack, and he was intubated, and he needed to leave the tubes where they were, but he could relax his jaw and touch his tongue to the roof of his mouth, and that would make him feel somewhat better. He was obviously uncomfortable, but he needed to be totally off the sedation before they could let him try breathing on his own, and he needed to breathe on his own for an hour before he could be extubated.

While Matt was doing his hour of breathing, Danny and Sharon arrived with our kids! I was thankful that Stacey was there to stay with Matt, and I got to go out to the waiting area to see the kiddos 🙂 I can’t even describe how good it was to see them after nearly 48 hours away. Fortunately, in the backpack Stacey had brought me with my clothes, there were also some art supplies that I’d been holding in reserve, so I was able to take some of those out with me, and we made sticker-dinosaurs together and hugged and played. I got to nurse Atticus, too – normally highly distractable in any situation with other people, he was desperate enough that he settled in and ate snuggled up on my lap while everyone else played. It was so good to get to see and touch and interact with each of them again!

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But soon I began to feel the other side of the tug-of-war constantly pulling at my heartstrings – I needed to get back in and be with Matt. And really the kids were getting to the end of their capacity for waiting room play. Danny and Sharon took them over to their hotel to see their dog, Dixie, and then took them out to dinner, so Matt’s mom could continue to have time to get things organized at her house. She hadn’t really been expecting an invasion of three small children plus all of our family’s half-unpacked suitcases and understandably needed some time to get it all put together in some semblance of organization!

Stacey left around then, too, and it was just Matt and me. Truthfully, that night was really hard. I knew Matt would be somewhat loopy coming off of sedation, but I didn’t really understand what that meant. What it meant for us was that we had the exact same conversations over and over and over and over again – and each time it was new for him. He retained the fact that he’d had a heart attack pretty well, but he didn’t generally know where he was or why he was there, he always found it remarkable that he’d had a heart cath and that they’d gone in through his arm instead of his leg, and he never remembered his nurse’s name. It really freaked me out. His nurse didn’t seem alarmed – she said we’d just have to give it a few days – but it was still pretty scary to me. It was so disconcerting to have him awake and able to remember long-term stuff but not really able to function or remember anything in the present. Close to tears, I called a doctor friend of mine from home and asked her whether it was normal. She reassured me that it was, which was very comforting, but I was still nervous.

Matt’s lack of short term memory and the glimmers of doubt about the source of Matt’s heart attack and the certainty that its cause had been eliminated were enough to make me pretty anxious that night. I even texted a nurse friend and told her my chest felt super tight and I was starting to worry that I might have a heart attack too and asked if that was normal. She assured me that it was, that I could ask a nurse to check my vitals if I really got nervous, but it was really almost definitely all related to stress.

Danny and Sharon offered to come back that night after taking our kids back to Matt’s mom’s for the night, but Matt was so out of it, and he and I were both so tired, I just wanted to sit with him and try to get some sleep.

Since Matt was now awake, the nurses brought in a recliner so they could get him out of bed and let him sit for a bit. While he sat, I brushed his hair, and then he got back into bed for the night. Of course, from the moment he awoke, he was very interested in having access to his phone and even beginning to post on Facebook for himself. I tried to limit his Facebook postings, as his short term memory was still entirely shot, but he was not particularly concerned about that and enjoyed returning to his postings of awkward photos.

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The nicest thing about Matt now having a recliner was that I was then able to stay near him for the night and just sleep there. It’s impossible to sleep well in a hospital, but we both got some rest that night, and I was very thankful for the progress we’d made in 24 short hours – I went from falling asleep alone down the hallway from my husband while he lay unconscious after a probable heart attack, uncertain about all that the future would hold, to knowing that he’d had a blockage in one of his heart’s arteries and that it had been cleared and that, while he was still unknowingly living in a Groundhog Day existence, he was at least conscious, and I was able to be near him.