Happy New Year from Dallas!

Yep, we’re still in Dallas. Becky’s had four pretty full days of rehab so far, and she’s pretty worn out at the end of each day - which means they’re doing their job! I don’t think every weekend will be as busy as this first, but they want to get her jump started on this new road. There has been a little progress physically. She’s still working on getting her appetite back, dealing with taste changes due to all the new meds, and having some swallowing issues.

You might be wondering how long we’ll still be in Dallas. So are we. We don’t have a definite discharge plan yet, but here’s what we know. The doctors and therapy team will get together every Wednesday and determine their best estimate for a discharge date. That date can be adjusted each week depending on Becky’s progress. As we get closer to that date, the team will talk to us more about what rehab looks like after discharge - e.g., outpatient rehab in Georgetown, home healthcare, etc. Since Becky just checked in last Wednesday afternoon, the various therapy disciplines hadn’t officially evaluated her yet so they gave us a “tentative” discharge date of January 10th. Personally, I think that’s a little optimistic, but only time will tell. I hope I’m proven wrong. Side Note: We also don’t know yet if the liver team will want us to hang around Dallas for any additional time after the rehab team says she’s ready to go home with a plan for continued therapy.

There have been a few more milestones reached this week. Becky has been able to wear her own clothes (she still needs help getting dressed, but she was glad to get out of the hospital gown). Becky’s general anxiety about rehab seems to be under control. We’re talking to a speech therapist and psychiatrist about how to deal with the anxiety and appetite/swallowing issues. It’s a lot. There’s been a lot of trauma. Some of it may just take more time.

Visitors are allowed and welcome. However, keep in mind that Becky will have therapy sessions scheduled through 3:00pm each week day. After that, she’s free except for dinner (around 5:00). Weekends are likely a little more flexible since I don’t expect therapy to be scheduled all day on future weekends. Resources are a more limited and prioritized based on patient needs. If you want to visit on a weekend day, just  be prepared to be flexible and feel free to text me in the morning since we’ll have a schedule by 7:00am each day.

My New Year’s Resolution is to watch fewer football games from Emergency Rooms and hospitals in 2024 than I did in 2023.

Continued prayers for Becky’s strength, discipline, appetite, swallowing, and ability to process her feelings and deal with her anxiety triggers are much appreciated.

Happy New Year and Hook ‘em!

Starting the next leg of the journey

Becky’s taking another step toward ending our extended retreat in Dallas and heading back home. The medical and surgical teams have felt she was ready for rehab for a few days now, and the team at Zale Rehab facility has finally agreed she’s ready and they have a spot for her. And yes, as the photo suggests, the facility is named after the same Zale family as the jewelry stores.

The length of this section of the road will depend on how quickly Becky is able to build some strength back up in those muscles that have gone largely unused for the past two months. I suspect that won’t be an easy task, but hopefully the incentive of getting back home and seeing family on a regular basis will be a great motivator.

A lot of things have improved over the last week. Becky’s much more aware of everything going on. She doesn’t remember a lot of specifics from the last couple months, which in many ways is probably a good thing, she’s much more clear about where she is and what the situation is. She’s also slowly regaining strength and starting to walk around again.

Other than her physical strength, the next biggest thing to work on is her anxiety. The combination of lots of new things, new people, new place, new expectations is taking a bit of a tole on her mentally, but we’re working through it, and asking for whatever help UT Southwestern can provide.

Your continued thoughts and prayers as we embark on this next stage of the journey would be much appreciated.

55 Days in Dallas

Well, here we are. We’re up to 55 days in Dallas...and counting. On the one hand, 55 days away from home seems like forever. On the other, if you would have asked me six months ago to predict when we would be on the other side of transplant surgery and starting recovery, I probably would have picked next summer at the earliest. And if you would have given me a choice last summer, I’m not sure which timeline I would have preferred.

Just a few weeks ago we were starting the process of searching for a living liver donor. And we were humbled by how many people expressed a willingness to be considered and evaluated. In a matter of days we went from thinking about the logistics of all that to being in an ICU with Becky fighting for her life while the medical team at UT Southwestern worked to find a compatible deceased liver and kidney donor. We started out by making a simple day trip to Dallas to find out if the team here thought Becky was even a candidate for a multi-week evaluation aimed at determining if she would qualify to be a transplant recipient. After only a few minutes in the clinic, Becky was sent directly to the Emergency Department to fast-track an evaluation, and she ended up in the ICU connected to continuous dialysis a few days later. My head is still spinning at how fast that all happened - not to mention all doctor and ER visits from the previous four months.

In any case, rather than reading my diary or memoirs or whatever else this post is threatening to become, you’re probably looking for an update on how Becky’s doing.

Compared to where we were a month ago or even a week ago when Becky went back to the ICU for a short farewell tour, it feels like we’re in a much better place. Some highlights of the last week:

• Becky has restarted physical therapy and took a short walk around the room today.
• We got to see two of our grandkids yesterday for the first time in 55+ days. After physical therapy yesterday, Becky hung out in a wheelchair for a couple hours and we met the kids in the lobby area.
• Wheels have started moving to get Becky to the rehab facility. There are a few medical things that need to happen including removal of a stint that was placed with the new kidney, but those conversations have at least started at this point.
• Most of Becky’s delirium seems to have been resolved. The combination of getting her body healthier, getting out of ICU, and making some adjustments to some of her meds has made a huge difference.

She’s not completely out of the woods yet. There are some things we’re still working on:

• Her heart rate is still a little elevated. Fortunately, not enough to send her back to ICU, but probably too high to start rehab.
• Her lung capacity is still pretty limited. The flow itself seems OK as she doesn’t generally need oxygen during the day although she has been getting a small amount overnight. She just tires easily because her lungs are fully expanding.
• Becky needs a lot of help standing up from the bed or chair. Some days are better than others, but she can’t stand up on her own yet. I suspect that will also need to improve before getting to rehab.
• Her blood pressure is a little high. On the plus side, that means the liver is working and in that respect her body is returning to her previous normal where she was on lisinopril for chronic high blood pressure. Some part of it may be a side effect of her medications. In any case, the docs are keeping an eye on it.
• Becky needs to find her appetite so she can get rid of the feeding tube. I think that would help the rest of her system in several ways.

All in all, it’s been a pretty decent week. It’s a little unfortunate that forward progress is slowing a little due to the weekend and holiday. In my opinion, in a lot of ways being bored in the hospital is worse than having a lot going on.

Although the pace is a little slower and the urgency a little lower, prayers are still much appreciated as we prepare for a long road of rehab to get to a full recovery.

Grateful for friends and family

Not a lot of news as we approach the holiday, but I did want to share a couple things.

First, Becky’s making slow progress this week. The trip back to ICU caused a reset of several therapies. The rehab folks had to re-evaluate. They determined she’s not quite ready for that yet, so we still have a little work to do with physical therapy at the hospital. Speech therapy had to re-administer the cognitive evaluation. As an untrained observer, I think she did slightly better this time around, so that’s a plus. They’ve adjusted some meds on her respiratory therapy thinking that might have contributed to her elevated heart rate. She’s a little more accepting of my reminders to do her own breathing exercises.

Even with all that positive news, it feels like we’re running a marathon and we’ve only moved forward a city block this week. Recovery and rehab will continue to be long and challenging. The doctor this morning said it could be six months before Becky looks back and thanks them for pushing her to do more every day. I’m looking forward to that day!

On another note, I was looking for a Christmas picture the other night that I could use for this blog post when I came across a Charlie Brown scene. As we navigate a very different holiday season this year, I thought about Charlie Brown’s Christmas Story and how it reminds us Christmas isn't about all of the lights, decorations, and presents, but it's about people in our lives and what they do for us. It reminded me of how grateful I am for all the people that have been part of our lives and our story over the past few months.

I’m grateful for friends and family, including those on Facebook that I might never have met in person as well as co-workers and bible study friends that we’ve only known a few months, who have offered words of encouragement, included us in their prayers, and provided support in ways I would never have imagined.

I’m grateful for a company, managers, leadership, co-workers, and everybody else that has made it possible for me to continue working as much as I can while spending time in Dallas with Becky.

I’m grateful for the medical team at UT Southwestern that has done so much to get Becky back to the point where she is today. She’s obviously nowhere near 100%, but she’s come a long way from when she was “one of the sickest patients in the hospital.”

Last but not least, I’m grateful that God has been with us and the medical team throughout this journey and has most likely intervened in ways we will never know or understand.

Merry Christmas to all!

Out of ICU (again)

It looks like we’re back on the road to recovery, although in some ways it feels like we’re a little behind where we started. Becky was only in ICU for a day, but she pretty much slept and stayed in bed for three days. It sapped some of the limited strength she had. In any case, we’re back on the seventh floor in the transplant wing after navigating this latest bump in the road.

Unfortunately there was no clear or definitive diagnosis of why she felt so bad last weekend. Theories ranged from a possible blood clot in a lung to an infection to a possible interaction between some of the medications she’s on. From what I can gather in this stage of my transplant residency, I would guess some combination of infection and drug interactions. The white blood cell count seems to point to some kind of infection. A couple of her antibiotic/anti-fungal medications were modified, but nothing else was really treated directly or changed. This would make a blood clot pretty unlikely since her heart rate and respiratory rate returned to normal ranges and white blood cell count has come down.

Becky felt somewhat better today. She’s certainly not 100% or even quite as good as she was a week ago, but much better than she was over the weekend. She did participate in some limited physical therapy today. She’s very weak and has a lot of work to do - which goes against her nature. It’s not that she shies away from work. She packed up most of our house in Illinois before we moved back to Georgetown the last time. That was enough to fill most of semi. No small task. She’s resistant to people telling her what she “has” to do. We’re working on getting her to accept that it’s necessary in this case.

The good news is that all indications are that the new liver and kidney are doing well. The main focus now is getting her strong enough to get to rehab and getting her lung capacity back to where it should be.

Sick Mama

I was hoping to avoid this post, but it seems like we’ve hit another of those bumps in the road. I would much rather be sharing a more positive message - something like, “after 50 days in Dallas, Becky is being transferred to a rehab facility.” Unfortunately, that’s not how it’s playing out.

Starting Thursday evening, Becky started feeling worse. I’m not sure how to describe it other than she feels sick and is having more general pain than she had been having. She felt worse on Friday so they started treating symptoms. Saturday continued in the wrong direction to the point where last night they started running another whole battery of tests.

At this point it feels like they’ve done pretty much “all the things.” More blood cultures. Checked for COVID, flu, and other viruses. Removed the PICC line and replaced it with two other IV’s. Replaced the catheter. Tested both as possible sources of infection. Did CT scans, EKGs, ultrasounds, and X-rays including scans of arms and legs looking for blood clots. Nothing major has shown up so far. Small amounts of fluid, but nothing out of the ordinary considering where we are in the recovery process.

As of this morning (Sunday), she still has elevated heart rate and breathing, seems short of breath, has lower oxygen levels (she’s back on oxygen), and is still in significant pain. Good news, bad news. There was a fungal infection that they started treating a couple days ago, and white blood cell counts have come down a little. However, counts are still high and this doesn’t account for all her symptoms. The medical team discussed options this morning

The decision at this point is to transfer her back to ICU where she can be monitored more closely until we’re over this hump. Hopefully we’re able to find the root cause quickly and this is a much shorter stay than the last time.

Continued prayers are much appreciated.

Happy Kidney Day!

More progress. More challenges. But the best news of all is that it appears that Becky’s new kidney decided to join the party! There was enough evidence of the kidney working overnight and throughout the day that today’s planned procedure to give Becky a more permanent port for dialysis was postponed and today’s scheduled dialysis session was cancelled. If there are no new setbacks there, Becky won’t need to do any more dialysis. Woo hoo!

The general trauma of the last couple months, the stress on her body, and all the new meds are combining to affect Becky’s mental state and mood as well. Some conversations seem fairly normal, and probably more so to people that don’t really know her. Other conversations are harder because either I’m struggling to understand what she’s asking for or because she doesn’t always have a full understanding of the situation. The medical team ensures us this is normal and will improve with time.

The main medical issue right now is to eliminate all possible sources of infection as the cause of Becky’s high white blood cell count. Her count has been hovering in the upper 30’s rather than the normal range of 4-11. It may just be her body’s reaction to the new organs but infection needs to be eliminated.

There were other signs of forward progress today. Becky was able to get out of bed and take a short walk before getting in the chair for most of the afternoon. Her appetite showed signs of starting to return and we ordered lunch from Chuy’s. Less direct signs of progress included the transplant team starting the process to get rehab approved by insurance, having an initial conversation with a pharmacy tech about all of the new transplant meds, and meeting with a nutritionist to talk about some of the foods to avoid.

The last few days have felt like they’ve moved a little slow, but at least I feel like we’re moving forwards. My best guess is that we’ll be in Dallas for another 2-4 weeks. I’m not sure if Becky will need some home health care, and there will be frequent appointments for lab work as well as many return trips to Dallas. My hope is that most of them will be routine and not to address complications.

Unless there are major setbacks, my blog posts will be probably be less frequent going forward but you’re always welcome to text me or connect in any other way if you have questions.