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.

Day 40 in Dallas

Day 40 brought a series of milestones on Becky’s road to recovery. After receiving a new liver and kidney on day 30, and going back for a follow-up procedure on day 36, we appear to have turned a corner. We had five significant events happen today. 

1. She was taken off the CRRT (continuous dialysis).
2. She had her first HD (hemodialysis or “traditional” dialysis).
3. She passed her swallow test and was placed on a regular diet.
4. She got out of bed a couple times and spent some time sitting in a chair this afternoon. 
5. Orders were placed to transfer her from ICU to a regular room. We’re currently waiting for a bed to become available.

Becky was also taken off oxygen, and the vasopressor IV meds to maintain her blood pressure were discontinued yesterday. We’re still waiting for the kidney to “wake up.” From what I understood from the doctor this morning, it’s not uncommon for kidneys that were on ice to take 2-3 weeks or longer to start working. If there are no actual problems like rejection (which there’s no indication of so far) about 98% of transplanted kidneys will eventually start working. Until then, Becky will be on dialysis.

Those that have gotten some direct texts from me over the last couple days know that it hasn’t been all rainbows and unicorns. The last couple days were kinda rough in a few ways. For those that didn’t get those updates, here’s a summary:

• Primarily, Becky was pretty lethargic and distant Wednesday and Thursday. She was watching TV, but not really engaging. She’s had a hard time completing thoughts and focusing. Some of that is still true, but she’s at least trying to hold some conversations. That comes with its own problems. :-(
• She is still confused about the details of the situation. She knows that there is still a lot of work to do, but at the same time she’s ready to go home. I have to wonder how tonight is going to go for the nurse on duty. We’re having a hard time even having a conversation about dinner without her getting frustrated with me.
• She’s really resisting her breathing treatments and doing her breathing exercises. As much as I hate arguing with her when she’s been through so much, this is one thing I’m trying to push, but she’s pushing back just as hard or harder! Pray for both of us!
• She has a very sore and weak arm that had a clot and was made more tender when they tried to “re-wire” the line in her artery.
• We need to start working on her appetite again. She’s still on the tube feed at night, but they want her to start eating during the day. It’s harder to figure out what to get her since we’re having trouble communicating (see above).

We’re not sure what the rehab plans or timetable are yet. I suspect we’ll start having those conversations after we actually get out of the ICU and into a room.

Back on the road

What a difference a couple days make. Actually, it was just a few hours. Yesterday afternoon Becky was still on the ventilator and there was pretty ugly stuff coming out of her lungs. Today it was placed on “Standby” and as of this evening it’s no longer in her room.

Yesterday afternoon Becky was still on mild sedation and the respiratory therapist admitted this afternoon that Becky wasn’t in a great place yesterday. However, a night’s rest and a nap this morning seems to have done wonders. There will still be some breathing treatments and she has some breathing exercises to do, but she’s just on minimal oxygen at the moment - no machine.

The delirium doesn’t seem to be a problem this evening. Crossing my fingers that she’ll be just as clear headed tomorrow morning when I return. Liver is still looking great. Unfortunately we’re still waiting for the kidney to wake up, but the biopsy showed no signs of rejection so no major concerns there at the moment. We’ll just keep waiting for now.

If there are no surprises overnight, she should be able to start a clear liquid diet tomorrow, physical therapy will be by to get her out of bed, and we may even start talking about a plan to get her off the CRRT and start traditional dialysis (unless her kidney wakes up, which would be even better).

So, after five weeks in the ICU we seem to be back on the road to recovery.

Thanks to all for the prayers! Keep ‘em coming!

Bumps in the road

Do you remember the comment I made yesterday about complications? Well, chalk up the first couple bumps in the road.

I thought Becky’s delirium had improved a little over the course of the day yesterday, but that proved to be short-lived. She had another bad night. She didn’t sleep for a second night in a row and grew more and more confused as the night went on. When I got here this morning she had gone from “mittens” to restraints overnight because she was trying to take out IV’s and lines in arteries, and also trying to get out of bed. She was also hallucinating. She mentioned seeing kittens and a puppy in her room, and somebody on a motorcycle in the hallway. I’m hopeful that a month in the ICU and missing a couple night’s sleep are the main causes and that this will improve with the forced sleep she’s getting today/tonight - which leads to the second bump.

Becky’s drain from one of her incisions had been consistently filling with fluid more quickly than expected and had been getting progressively more bloody looking. When combined with her need for additional units of blood over the past couple days, the surgical team was concerned there may be some internal bleeding. Even though her oxygen levels dropped noticeably on the way, Becky went back to the OR this morning to get a second look. The good news is that there was no sign of bleeding. They drained some additional fluid and “old” blood, did a biopsy of the kidney to make sure there are no signs of rejection (no results yet), and used a camera to verify there were no issues with her lungs.

Due to the reduced oxygen levels, Becky was left on the ventilator and sedated for today/tonight - so she is getting some sleep. Probably not the best way to get rest, but hopefully it helps. Her progress overnight and in the morning will dictate the timeline for pulling the ventilator tube back out and getting her back on the recovery road. And then we can work on the sleep, delirium, and other issues that don’t need to be on a public blog.

So once again, we’ll see what tomorrow brings.

Progress is slow and mostly steady

It’s hard to believe it’s already been 5 days since Becky’s surgery. It’s also hard to believe it’s only been 5 days since Becky’s surgery. Becky’s not the only one losing track of the days. I have to double check myself from time to time.

On the plus side, her new liver is doing great. The chart on the right tells that story better than I could. Most of us are familiar with bilirubin levels and how the liver plays a role in keeping them under control. We’ve seen or had babies that looked a little yellow because the liver wasn’t quite doing its job yet. Well, during Becky’s time in the ICU prior to surgery her bilirubin numbers were steadily climbing, and her skin and eyes were getting more and more yellow. Then only three days after surgery her number was back in the green, and her normal color has returned. This is just one of many numbers that indicate the new liver is doing well.

The kidney, on the other hand, is taking its sweet time. We’re still waiting, but everyone is still optimistic that it’s just a matter of time.

Becky’s been out of bed a couple times sitting in a chair. She watched the Texas football game with her brothers yesterday. Hook ‘em! College Football Playoff bound! Hopefully we won’t have to watch those games from the hospital. She’s off oxygen. She even walked around the room a bit yesterday and she seemed to be coming out of her ICU delirium. Lots of positives in just a few days.

Last night was a bit of a setback. The doctors were trying to use Melatonin to replace her Seroquel to help her sleep. She takes Seroquel as one of her anxiety meds, but it also helps her sleep at night. I believe there are concerns about its interaction with some of her new medications which is why they’ve lowered the dose and were trying the Melatonin. However, it feels like the Melatonin was having the opposite effect on her. It was keeping her up and after two nights was leading to new confusion and some hallucinations. I think those side-effects have worn off a little as the day has progressed, and hopefully she’ll be better after a good night’s sleep. And she won’t be getting any more Melatonin.

If all goes well today, they will try to take her off the CRRT (continuous dialysis) tomorrow and transition to traditional dialysis (a.k.a. HD or hemodialysis). If that goes well, she could move from the ICU to a regular room in the next day or so. Rehab will almost certainly come after that.

She’s also been cleared to start a regular diet and ate a little bit at lunch and dinner. Not a lot of appetite, but she’s keeping down what she does eat so that’s good.

In addition to prayers for her continued recovery and minimal complications (there are almost certainly going to be some at some point), please pray that Becky has the strength, determination, willpower, resolve, self-discipline, etc. to follow the guidance provided by the doctors, nurses, therapists, nutritionists, and her family and to do the right things for her recovery and long term health. It won’t be easy for her. It will take a village.