Home and Recovering Well!

Those of you who follow me on Facebook or Instagram are likely already aware, but my last update here was from the morning after surgery, so we’re overdue for a post here!

FangFang’s pain remained under control with oral pain meds throughout the day on Wednesday, and we were able to get her Pamidronate infusion that afternoon, so we were discharged from the hospital reasonably early Thursday morning! We so appreciate everyone who is a part of FangFang’s care team in Omaha, but it is so good to get out of the hospital. FangFang is so much more herself, and if I can handle everything she needs at home, this is a much better place for her to continue to heal and recover. We made it home Thursday evening, and it was a huge relief to be back together as a family again.

It’s interesting, though – re-entry is always hard. Or maybe that’s just my family? 😉 I doubt it. Kids are perceptive. FangFang obviously needs extra care and attention after surgery, but my kids who stayed at home had also been away from me for 3 days, and they crave reassurance that they matter, too. Thursday evening was full of not a few meltdowns 🙂 But we made it through!

My mom stayed through Friday, and we had a low key day at home. Honestly, a lot of it looked like this – kids sprawled out on various chairs and couches and on the floor, watching tv.

My aunt and uncle sent some Ni Hao Kai Lan DVDs, and it has been nice to have something new for everyone to enjoy! We have some pretty consistent screen time limits at our house, but the reality is that FangFang currently has 3 limbs immobilized, which makes many activities difficult, if not impossible. We’ve been doing a bit more screen time than usual, and I think that’s entirely appropriate, all things considered.

But we’ve also been easing back into our normal routines. We took 2 weeks off of school while we had family in town for Thanksgiving and then while FangFang and my mom and I went to Omaha for surgery, and it’s always a bit difficult getting back into the groove after a long break. I’ve kept expectations low, and I planned for us to make a truly slow transition, and it’s been going alright 🙂 It takes a lot of work and consistency from me, but we’re getting there!

We’re working with the littles on letters, which they are greatly enjoying!

And the bigs are managing to work some fun into their school days 🙂 Miranda Grace spent some time the other day building with Madeleine CaiQun’s math blocks.

She announced, “This is the story of Vader and how he comes face-to-face with God.” This girl never lacks for creativity 🙂

And for her part, Madeleine CaiQun had some fun making herself into a bean-bag person upstairs.

I’m pleased that we’ve made the transition back to normal life as well as we have. Of course, I’ve been plagued by a cold for over 2 weeks now, and both Miranda and Atticus have been coughing some the last couple days, but I’d hoped everyone else was going to escape the worst of this illness. Miranda has been feeling pretty awful today, though, so I kept her home from swim practice and set her up on the couch for some extra rest and relaxation.

I’m hoping we can make it through the next couple weeks without any more illnesses and we can get a bit more school done before it’s time to disrupt all of our routines again for Christmas!

 

Surgery Update

I’d hoped to get a longer update posted last night, but it just didn’t happen – comforting FangFang when she was feeling yucky and then sleeping when she was comfortably sleeping took priority! I do so appreciate the prayers and support from all of you, though, so I want to let you know where we’re at today!

To back up a bit, we’d been planning for months to do bilateral tibia rodding surgery yesterday, but when FangFang broke her right humerus about 10 days ago, I’d sent a copy of the x-rays to her orthopedic surgeons in Omaha, just in case seeing those images changed their minds about surgery plans. Their assistant e-mailed me on Monday and said Dr. Esposito would talk with me on Tuesday about our options, but I didn’t think much of it. The fracture wasn’t incredibly severe, and operating on two limbs at a time is a fair amount already. However, when we saw him in pre-op yesterday, he suggested that we prioritize what was giving her the most trouble but try to rod all 3 bones if possible. He said he expected the humerus to continue to give her trouble (it had fractured previously in China and hadn’t healed to be as straight as would have been ideal, so we’d already been suspecting it could be problematic for her over time), and as long as it’s incapacitated anyway, we might as well fix it now and just have one surgery and one recovery period for all of it. These are the moments when I am most thankful we come to Omaha for care. Having an orthopedic surgeon who has worked with hundreds and hundreds of kids with osteogenesis imperfecta and can make these recommendations based on years of experience that give him more expertise than anyone else in his field is so helpful to me as a mom when I need to make the ultimate decision about what we should do. Though I was somewhat intimidated at the prospect of FangFang having 3 limbs fully incapacitated for a complete 4 week recovery period, I agreed that his proposal made the most sense, so that became the new plan for surgery, and they were, in fact, able to get to all 3 bones! They were even able to use the FD rods, which can expand with her bones as she grows, which is awesome!

It turns out that adding on the humerus does change the pain management aspect of post-op recovery pretty significantly, though. For rodding in the lower body, the preferred strategy for pain management is to place an epidural, but that epidural does nothing for pain in her arm. When she woke up, she was pretty upset. She got some heavy duty pain meds, all in quick succession, and some oxygen to help her after an intense crying spell, and that all helped.

She remained pretty out of it for most of the afternoon and evening, though. She felt nauseous and wanted to keep her bowl nearby…which was a bit awkward, since she cycled pretty rapidly through cycles of wakefulness and sleep, so she often fell asleep with her head in her bowl. We’d try to lean her back and remove the bowl, at which point she would awaken, outraged, and yell, “I need my bowl!” Whatever you say, my child…

As the afternoon wore on, she started to have some longer stretches of more peaceful bowl-less sleep, though.

And then she had more periods of wakefulness, during which she had very specific instructions for me about how I was to sit next to her on her bed with my arm underneath her head. That I can manage 🙂

We were able to FaceTime with Matt and the kids, too. She remained pretty out of it until later in the evening, though. She had a pretty awake, alert period from about 7:30 – 10:00 last night, in which she seemed increasingly herself, beginning to show off what she was watching on her ipad to her nurse and chatting a bit more.

We actually got a pretty good, long stretch of sleep last night – by hospital standards, at least 🙂 We all slept pretty well until around 4:00, when FangFang was asking if it was time to wake up and eat breakfast, but I assured her it was still night time, and we went back to sleep again. In my least favorite of standard-hospital-policy experiences, though, the lab person came at 5:30 a.m. and turned on the light and announced that we needed to get the nurse to come in un-tape the board under FangFang’s IV hand so she could do a blood draw. I’ve already asked what I need to do to request that the orders for tomorrow morning’s lab work be changed to be for once she wakes up instead of at 5:30. How institutions that are supposed to be committed to doing no harm came up with the brilliant idea of waking children who would greatly benefit from rest at 5:30 in the morning to stick them with a needle and draw blood is beyond me.

But now that we are up, FangFang is enjoying one of her favorite benefits of hospital time – virtually unlimited screen time 🙂

She is definitely more herself this morning. She still tells me every 5 minutes or so, “Mommy, I feel sick,” but she is more interested in engaging, more friendly, and chattier with people she deems friendly (yes to her nurse, no to the lab tech who drew her blood).

The pain management team, which I love here, has already come by this morning, and they just turned off FangFang’s epidural. Assuming she does well without it, they’ll pull it, which is the first step in moving us toward going home, a prospect to which we are all looking forward. FangFang has asked about 12 times in the 2 hours she has been awake when she can go home to her brother and sisters. I’m anxious to get home, too. Today is Atticus’s actual birthday, and I’m so sad to be missing it 🙁 Of course it phases him not at all – we celebrated his birthday last week, and when I told him last night that it was his last day of being 2 and then he’d be 3, he told me, “But I am 3 years old, Mom!” Okay, my boy 🙂

Essentially, before we can go, we need to get FangFang transitioned to all oral pain meds, get her next Pamidronate infusion (which can happen after the epidural is pulled), and get her orthopedic surgeons to sign off on discharge. I’m hoping and praying for tomorrow (Thursday) morning. If you’d pray with us to that end, too, I’d appreciate it!

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.