Our Disney Adventure

Warning: This is a rather lengthy post. :-)

Some of you may already know this, but it had been one of Becky’s goals for several years, prior to liver disease and transplant issues, to take a family vacation to Disney World - one that included all the kids and grandkids. As we approached her one-year transplant anniversary last November, Becky was adamant that she wanted to schedule it for sooner rather than later. In an attempt to avoid some of the largest crowds, we decided as a family to shoot for October of this year. And so, the wheels were set in motion. We picked some dates that minimized the number of days kids would miss school and I started making reservations and buying tickets.

If you’ve been keeping up over the last year, either via Facebook, this blog, text messages, or just normal conversations, you know it hasn’t been all rainbows and unicorns. Becky has had her share of issues starting with the shoulder replacement last December, the repeated small bowel obstruction issues, a couple infections, and most recently, her anemia diagnosis. Even as these complications threatened to derail the family vacation, we continued making and finalizing plans. Even as her fatigue from the anemia threatened to keep her down, Becky reiterated that we did not need to reschedule. Even as a couple late season tropical depressions threatened to dump rain on central Florida, we crossed our fingers, bought rain ponchos, and stayed the course.

I had three goals for the trip:

1. No Emergency Room trips
2. No wheelchair for Becky
3. Everybody eats and drinks enough to survive (I borrowed that one from Courtney)

With all that as background, I imagine you might be curious to know how it went. Well, things did not start out very well. Becky and I arrived earlier in the day than the kids and spent a few hours at Disney Springs. After that, Becky decided a nice relaxing bath in the garden tub in our rental house would be a good way to cap a day that started with a 3:30 am walk-up call to make our flight in Austin. Unfortunately, she lost her balance getting out of the tub and fell pretty hard on her arm. A couple hours later, as the pain level increased, we made a trip to a local Emergency Room clinic to get it checked out. We mainly wanted to verify it wasn’t broken - even though Becky was prepared to continue our adventure in a splint of cast if necessary. Thankfully, it wasn’t broken, but the sling and pain meds meant she needed to spend most of her days in the park getting pushed in a wheelchair. It was only the first day, and we had failed to meet the first two goals.

Toward the end of our first day in the park, Becky was shopping in one of the Magic Kingdom gift shops. She was walking for a bit because it was too crowded to maneuver the wheelchair easily. When she was done, she lost her balance getting back into the wheelchair and sort of fell into it face-first and landed with her knees under the chair. This was a much less serious fall, but she did get a new scrape and did need help from Mr. Incredible to get back up. No, that wasn’t me. I was with the kids a little way up the street. It’s Halloween party time at Disney so the Mr. Incredible was another park visitor that just happened to be nearby and offered to help. The folks at Disney were awesome in helping get Becky's new scrape bandaged up and offered to provide any medical services or help we needed. I think this fall hurt Becky's ego as much as anything, and thankfully, this was her last fall of the trip.

The weather was mostly cooperative. Even though there were a couple tropical storms headed toward the East Coast the week before we left, they both veered away and headed north so there wasn’t any widespread rain. We did have a couple days with storms. One was fairly short-lived, and the other was in the evening as we were leaving the parks. Mostly, it was warm and humid - warmer than we expected for October, but not overbearing.

For those that aren't familiar, Disney has special events in Magic Kingdom during the holidays. Mickey's Not-So-Scarry Halloween party in the Fall, and Mickey's Christmas Party after that. Regular ticket holders have to leave the park early on these evenings, and you have to have a special ticket to attend the special late-night festivities. Crowds are limited to about a third of normal park capacity. We had tickets for one night and enjoyed the special Halloween parade, the special fireworks show over the castle, trick-or-treating for the kids, and some shorter lines at a few of the rides. It was a late night, but it was a lot of fun for everyone.

A couple days later, Becky wasn't feeling well and decided she needed to stay home and rest up a little. After pushing her wheelchair for most of the first few days, I felt like I could use a break as well. My hip and right leg were burning and going numb. That will be one of the topics for my PCP at my next appointment. The kids went to Animal Kingdom without us that day. They told us later that it was probably the least wheelchair friendly of the parks, so it was probably a good decision all-around.

We had one more full day with the family in the parks. We did a little park hopping to catch a few things we had missed. Brian was feeling bad, but he pushed through. He went to the CVS Minute Clinic when he got home and was diagnosed with strep throat. I'm not sure how he kept it to himself, but thankfully he did.

Becky and I stayed one extra day to make it easier to coordinate trips to the airport, and checkout from our Vrbo rental. We went back to Magic Kingdom and rode a couple things we had missed and did a little last-minute shopping. We kept it pretty low-key and we left the parks fairly early. It was hot and crowded and we were running on fumes.

Our return trip home was mostly uneventful, although we did have to do a last-minute swap of items between our suitcases at the Southwest counter because Becky's was over the 50-pound limit. She bought a few too many t-shirts.

In the end, it was a great trip. Everyone had a great time, and most of us brought home memories that will last a lifetime. The younger kids probably won't remember much, but we have hundreds of pictures for them to look back at! And we all met goal #3!

P.S. We're still working on Becky's anemia. She received iron infusions in October, and she has follow-up labs scheduled in November to see how her bloodwork looks. We also need to coordinate treatment for her osteopenia (pre-osteoporosis).

Kidney Stones, and UTIs, and Anemia, Oh My!

It's time for another update.

Things have been going fairly smoothly since Becky's last surgery in June. It feels like her SBO (small bowel obstruction) issues have been resolved - at least for now. She did make one return trip to the ER and hospital in July for what felt like another SBO issue. This came as quite a surprise since she had the surgery which was supposed to "clean up" all the scar tissue that was thought to be the most likely root cause of her SBO problems. This particular episode and ER/hospital trip was not quite as severe as most of her previous ones. Things pretty much cleared up on their own within a day or so and she was able to head back home.

On the other hand, my body decided it was time to join in on the fun. A few weeks ago, I woke up extra early on a Friday morning with pain in the left side of my back. Since I had been down this road a couple times before, I was pretty sure what the cause was, but I was hoping this kidney stone would take care of itself without a trip to the Emergency Room. No such luck. Within an hour or so, I knew that at a minimum some pains meds were going to be in order. Something stronger than over-the-counter Tylenol or Ibuprofen. It was a relatively short trip. A scan to confirm the stone (and a few other lying in waiting), some pain meds, and something to help it pass. No surgery. I was better in a couple days, but I'm doing some follow-ups to decide on next steps. Becky said it felt weird to be sitting in the chair in the ER room while I was the one on the bed being treated. Anyway, enough about me. Back to Becky

Becky also made one more trip to the ER. She had been diagnosed as being anemic a few weeks ago. In fact, she's been borderline anemic off and on since the transplant. It's a common issue that transplant recipients have to deal with, and the transplant team has tried to improve things with various vitamins and meds. It's been a little worse lately and we had been working on the best plan to get Becky some iron infusions. Anyway, Becky woke up one morning with some chest pain. Since anemia can lead to heart issues, we decided to get her checked out. Better safe than sorry. The good news was that there were no heart issues. The bad news was that during the course of running all the tests they determined Becky had a UTI. Actually, it wasn't terrible news. Since Becky's on immunosuppressant medications, it's good the UTI was found early so it could be treated. She stayed in the hospital a couple days getting IV antibiotics and everything cleared up.

As far as the anemia goes, we were able to get the insurance to approve getting iron infusions at Texas Oncology here in Round Rock rather than having to make multiple trips to UTSW in Dallas. Becky finished a first round last week, and she's feeling a little better. It was a little emotional for her to get those infusions in the same room that her mom got chemo treatments a few years ago. Life likes to throw a curve every once in a while. Anyway, she's still tired, and she'll be getting some follow up blood work in a couple months to see where things stand.

So, overall things seem to be going fairly well. We haven't had any major issues in a few months. It feels like the we're dealing with fewer of the big things, and we're finally figuring out what Becky's new normal is two after her transplants. Yep, November 28th will be two years.

Until next time...