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.

The journey continues

As most of you probably already know, Becky’s liver and kidney transplant surgery yesterday was a success. However, that is not really the end of our journey. It is simply a mile marker, a significant mile marker to be sure, on this crazy road we’re on. As the picture suggests, it’s a road that disappears into the mountains so we’re not really sure what’s on the other side yet. There will almost certainly be bumps, curves, valleys, tough climbs ... should I go on? Are you tired of my analogies yet? I’ll move on.

In many ways today has been a pretty uneventful day. The surgical team for the liver is happy with how the new liver appears to be working. No concerns there so far. The new kidney is being a little slower to “wake up” (their term). Becky was placed back on the CRRT (continuous dialysis) yesterday evening. This is not a surprise. Apparently it’s common for the kidney to take a little longer to start doing its thing. In fact, from this point forward, it will be the kidney team that’s in charge of her care and medications. The kidney is more subject to rejection and overall requires more monitoring. Who knew?

Becky is still on the ventilator this afternoon. We’re waiting for her body to get over the sedation and recover from the trauma of a 6-1/2 hour surgery and two organ transplants. Again, no real concerns from any of the numerous doctors, nurses, interns, residents, techs, therapists, etc. that have been in and out today. We just need her to get past this so we can start the next part of the journey. Real time update - she just started a “trial run” of breathing on her own with limited ventilator support and seems to be doing OK.

I suspect we will be in Dallas for Christmas this year. I’m not sure yet if Becky will still be in a rehab facility or if we’ll be in a hotel room with frequent hospital visits. Hopefully that picture and timeline will become more clear in the coming days.

In the meantime, we continue to be thankful for everyone’s support, including my employer’s, and we continue to ask for your prayers as we prepare for the next leg. Maybe I should have used an Amazing Race theme for this blog. Oh well, too late now.

Four weeks and counting

It’s hard to believe, but we came up to Dallas four weeks ago today for a simple initial screening appointment to see if the liver team at UT Southwestern thought Becky would be a candidate for a transplant. Only 10 or 15 minutes into the appointment the doctor answered by sending us to the Emergency Department, and a couple days later Becky was moved to the ICU. And four weeks later, that’s still where we are.

There haven’t been any significant changes in the last couple weeks. We’re just hanging on and waiting for a matching donor to be located. Nobody is more anxious to hear some news about a donor than Becky. She asks me to take her home multiple times a day. And as much as I’d love to do that, I’m pretty sure our insurance won’t cover the kind of home health care she would need at this point.

Physically, she's been in pretty much the same place for a couple weeks. Mentally, she's suffering from ICU delirium and is starting to experience hallucinations. The doctors continue to try to tweak things to keep her on a steady path and ready for surgery when the time comes.

Personally, working from a hospital room for four weeks and watching Becky struggle is beginning to wear on me as well. I continue to be grateful for the flexibility of BAE Systems as they find projects I can work remotely, for the assistance being provided by the insurance, for the care being given by the UT Southwestern team, and for the support and prayers from friends, family, and co-workers. I'm not sure where we would be without any one of those. Thank you!

Please continue to pray for our patience, the expertise of the medical staff, and Becky's strength.

Take a number … and wait

For those of you that have already asked, and for those that might be wondering but haven’t asked, we’re still in the queue. For as fast as things progressed over the Summer and into the Fall, the days have suddenly started to drag. It feels like we’ve transitioned from a sprint to a marathon. Even that isn’t a great analogy because unlike any kind of race, we don’t have any idea where the finish line is.

The take-a-number analogy is closer, but even then you have to imagine that it’s a random number and the numbers aren’t being called in order. That’s where we’re at. We have a number. We’re in the queue. We just don’t know how many people are in front of us or how fast the line is moving. On top of that, the numbers are being called by random people and you have to wait for a person with the right skills to call your number. So, enough of the analogy.

Where are we? We’re waiting.

That’s really about it. The doctors continue to manage Becky’s fluids and various components of her blood - e.g., sodium, calcium, red/white blood cell counts, and so on and so forth. No major issues. They just continue tweaking things and making adjustments on the CRRT (continuous dialysis) as necessary. The main thing they’re asking Becky to do at this point is to try to eat more protein during the day. It’s hard for her since she doesn’t have much of an appetite and she’s not supposed to have most of the things she really wants. In fact her appetite is such that even with an appetite stimulant and the doctors giving her some grace on the diet restrictions, she ate less than 1/3 of a slice of pizza last night and about 3 chips with queso for lunch today - and those are two of her favorite things.

Most days she tries to work with physical and occupational therapy when they come by to help maintain her strength. She walks up and down the hall about every other day. She sits in the chair for a few hours on most days. We’re just managing all the things that come with an extended stay in the ICU. Becky’s also dealing with ICU delirium. She’s disappointed every day when there’s no news about a donor. She’s starting to get a little discouraged. In her current state, it’s really hard to explain that we’re waiting for somebody else that has elected to be a donor, is a match, and is healthy enough, to pass away. As one doctor stated, we’re waiting for another family to have their worst day so we can have our best day. It’s a tough spot to be in.

And so we continue to wait ... and pray ... for an unknown date and time to arrive, and for us to have the patience to make it to that date and come out stronger on the other side.