There are many details and much information we should have been posting along the way these past four weeks. Suffice it to say that life has been entirely too crazy around here, and hopefully we’ll be able to fill in the gaps in the coming weeks. But, for now, here’s a little re-cap…
Sarah’s last hospitalization, her “overnight tune-up”, ended up lasting 6 days. This extended stay drew enough attention that the liver team has begun (finally) to finish their evaluation and work toward a decision. She also had another wonderful experience with the Rainbow Kids Team, a psychologist, and the alternative medicine doctor. Many new and wonderful blessings came from those visits, and she felt better emotionally. She underwent another endoscopy, which went well and was helpful in determining her health, related to the effects of her PLE. They also took her off the coumadin because her numbers have been really “wacked”, as Dr. Yetman said. To help her digestive system with any agitation it may have as she eats, they started giving her lactaid and gas-x. That made her feel a whole lot better physically. As a greatly needed distraction, and fun few hours together, I brought the kids to Utah and we celebrated Bryson’s birthday together in the conference room of the Children’s Surgical Unit.
Sarah went back to Utah on October 29th for the “final evaluation tests”. (How many times have I used that phrase?) She had a chest ct scan, 18 more vials of blood drawn, pulmonary function tests (which she was finally able to do with the help of an amazing technician and a different mouthpiece), and a bone density scan. All of which looked good, and should give them the information they need. We also saw her cardiologist and transplant doctor at Primary’s for follow-up from her hospitalization two weeks earlier. Things are looking okay, but they brought up a concern about her nutrition, because of the PLE induced diarrhea.
Steve (and the rest of us) survived the election cycle, having consulted and produced printed/mailing materials for 12 local candidates. (He handled over 150,000 pieces just for mailing!) He worked so hard, he earned us more than enough money to take our family trip to Disneyland and pay off some debt!
We spent 8 days in San Diego and Anaheim and had the most wonderful time together, gearing up for Sarah’s upcoming surgery and “stuck in Salt Lake” period. Being at sea level was good for her circulation, and despite the head cold she got, she felt really good and was hardly swollen at all. We loved laughing together, and marveled at the wonder and grins pasted on the kids’ faces all week. We experienced so many “firsts” in such a short period of time together. What an amazing, good thing it was for all of us!
While we were there, we received a call that Sarah would need just one more test before she could be listed for heart or heart/liver transplant. The heart team doesn’t feel comfortable doing the transplant without replacing the liver, too, and the liver team doesn’t see the need to transplant the liver if it doesn’t need to be replaced. The only feasible and most exact way to determine the extent of the liver damage is to do a biopsy. They will also tap the fluid in her belly. They hope to determine if her liver is failing and causing some of the swelling, or if it’s just the heart and PLE. She had another check-up with her Primary’s doctors again yesterday, so the biopsy was at the University today.
I just talked to Steve a couple hours ago. He said things went really well during the procedure and the doctors got a great sample and exactly what they need. Sarah had a really hard time with recovery again, so we’ll have to figure out what can be done to better help her with that transition.
So, that’s the update in a nutshell. Pictures, details and expression of feelings will follow…