Tiny P had her post op this week, and everything looked good. She is healing well, and the chest X-ray looked nice and clear. We are adding a liver specialist in a couple weeks who will want to follow her for her liver damage, and a geneticist to help us figure out the issues surrounding her heterotaxy and asplenia, along with a probable ciliary disfunction.
So, what’s next for tiny P post surgery? She will have an echo in a couple weeks to check her heart size and see how she is healing. From there, we will schedule another heart catheterization to determine when and what her next surgery will be.
The husband posted this information on Facebook (The Paisley Page) about what will happen next and what some of the possible scenarios are. Many people have asked what comes next and if the successful surgery means that tiny P is cured. Since the husband’s answer is so well written, I thought I would share it here, too…
“Sounds like the surgery was a success, is she cured?”
Not even close. tiny P has half a heart, which means she will never have a fully functioning heart. Her body has been “hot wired” surgically to keep her alive, but she will never be free of heart disease. This surgery is a step in the right direction, but from what we understand she will likely have several more hospital visits for catheterization procedures, and then (hopefully) the fontan surgery in a year or two.
The tough news is that her future is still incredibly uncertain. The best case right now is that she has a successful fontan procedure, and lives to 60, according to the doc. However, the fontan procedure only reached widespread adoption during the 70’s and 80’s, so those children who had it early on are just starting to hit their 40’s, meaning that they are still learning about the long term affects of the procedure. Right now there’s still a 60% chance that she will be on that path.
The other 40% is some nasty outcomes (best to worse):
1. No fontan, life expectancy at most into the 30’s
2. Fontan that fails, or protein losing enteropathy, leading to heart transplant. 50% chance of death within 15 years.
3. The valve repair fails, along with her electrical system, death within a few years.
Sad to say, this page will be getting a lot of use over the coming years.
While these outcomes are certainly not what we want for her, I focus on the joy that she at least has a strong chance, and is getting some of the best medical care in world. If she didn’t have a mother who moved heaven and earth to get her to the US in less than 25% of the time a normal adoption takes, she would most likely already be dead, or at best surviving a few years in a Chinese hospital.
Bottom line is that she still has a lot of tough years ahead of her, but her stubbornness, will to live, and ability to smile through discomfort give us the strength to carry on. We love her so much, and the joy she brings to our life and to everyone who meets her is amazing to see. We see the hand of God in the way she has become a part of our family, and we pray for the long journey ahead.