As not much could be said anymore before the operation, I devised this list of frequently asked questions with my father. Here I try to answer some detailed questions on the operation.
What is the duration of your operation?
Between six and twelve hours. That is including preparation by the anaesthesiologist. The variability depends on how hard it is to get to the bit of liver they want to cut out, and if there are any complications, like bleeding or bile leakage.
What do they cut out of you?
The liver is made up of 8 segments. Each segment has its own biliary tree, thus making them suitable for transplantation. They take two segments that are easy to remove on the long end (my left side). That will include some blood vessels and bile ducts.
Will there be a hole after they remove the partial liver?
Essentially, yes. But don't see it as a great way to loose weight; the six liver sections that are left will grow to take up that space within six to eight weeks. They will also take away my gall bladder, that one will not grow back.
Do they need to test your liver to check whether it's really suited for Alexander?
Not really. During my screening they did most of the testing, and as far as they can test we are compatible. The main issue is if our blood (and potential transfusion blood) will mix, for which they do one more test the day before the operation. In the end the proof of the pudding is in the eating. They will see if it will stick if it sticks. It tends to take up to four weeks to know for sure.
When do they start operating on you?
The same time I get up for work, they start preparing me. Half past six in the morning. They like to start early as the operations will take so much time.
When do they start operating on Alexander?
The preparation for Alexander starts around 9 o'clock. They take two hours to prepare (putting all the tubes into a small child is a bit fiddly). At eleven, they'll have had their first look at my liver by then, which is a go/no-go milestone. At that point they decide to abort or proceed with opening him up.
When are they finished with you?
They will be closing me up at around four o'clock in the afternoon. I'll then be moved to recovery, and from there to Intensive care. I'll stay there for the night, and be moved to the nursing department somewhere on the next day.
Will they need to "groom" your liver, to make it fit?
Ideally, the liver fits without further cutting. You don't want to cut too much; there will be more points for leakages. In extreme circumstances they might trim it a little bit.
What parts need to be hooked up?
The aorta and portal vein are the first to be connected. Then a plastic surgeon will come in and finish all the smaller arteries and bile ducts. Also, they reconnect the bowels, a connection first made during Alexander's Kasai operation.
Alexander's blood veins are much smaller than yours. How do they connect?
Short answer: with a lot of skill and a microscope. They basically sew them together. They make a small incision in Alexanders artery, so they can make a bigger cone to fit mine in. When needed, the surgeon will take a blood vessel from some place else in my body, and use it as a converter for Alexander's.
When can they see if the new liver is working in Alexander?
At around four in the afternoon they will have connected the big arteries to the new liver, so they will hopefully see blood flowing through. Not working would probably mean rejection of the organ. This could happen instantly, or not at all. The first four weeks after the operation hold the highest likelihood of failure. After that it's usually safe. Still, a donor liver may fail at any time.
When is Alexander's operation finished?
The first sign of progress is when the blood is flowing through his liver into the portal vein. This will be around four o'clock. His operation is finished when the surgeons are convinced he's going to be okay. They make three echo's to make sure everything is okay. They will decide whether to close him up or not. Sometimes it's better to leave the cut open, so the connections have a chance to strengthen up. He's then moved to the Intensive Care, where he will recover for a minimum of three days. Minimum? If there's complications or they need to close the cut, then he needs to go back to surgery, effectively restarting the clock.
When can you conclude Alexander's operation is a success?
When he comes out of it, the surgeons deem it a success. When the liver is rejected, or he suffers from massive complications, it's not a success. In the end, when we leave the hospital, we know the procedure was a success.
When will you be discharged from the hospital?
They predict that I will be within one week after the operation. That doesn't mean I'm fully recovered. That will take a few more weeks. And I'll stay in Groningen anyway, to be with Zuzana and Alexander.
When will Alexander be discharged?
When what needs to be done is done. According to the doctors, this can be anywhere from three weeks after operation (their quickest recovering patient ever) to a year (a patient suffering from lots and lots of complications, their slowest recovering patient ever). As Alexander has a lot of energy, is a very lively boy, and is still only in the first stage of his liver failing, we have good hopes. If the Kasai Operation could be an indication, he would be back on his feet in no time at all. But we'll have to wait and see. He leaves the hospital when he's stable, and has no complications.