What where we doing when Alexander was not in the hospital? Since his diagnosis the care we had to give him went up tremendously.
His main problem was growth. He needed to grow in order to have the best chances during surgery. But his liver didn't process food correctly. Specifically, it had a problem absorbing fats, as this is what the bile in the liver is used for. So quite quickly we had to add Heparon to his diet. This is a fairly pricey medical nutrition product that has increased energy content, is enriched with branched-chain amino acids and zinc, and has reduced levels of sodium. It also adds vitamin E and has no fibre content. This all to make it as easy as possible to digest for the liver.
Since nutrient absorption was still a problem, he needed lots of it. We tried feeding him with bottles for a while, but this was insufficient. At some point he just was not hungry any more, and refused the bottles. Not that strange, as he was already eating twice as much as other children his age. We then added night feeding into the mix. He got a nasal tube through which we fed him with a pump whilst he slept.
The tube introduced it's own complications into the mix. We had to order a lot of food and peripherals every month. And Alexander loved to pull the tube out of his nose. Then we had to call home care, who would help us put it back or change it. This of course would usually happen late in the evening. Zuzana spent most of her time with the little guy trying to feed him and taking care of his medicines.
Besides the constant feeding during the day, he also needed a lot of medicines and vitamins. Anti-biotics to keep the intestinal bacteria at bay, Rifadin to keep the bilirubin-induced itchiness at bay, and various vitamins that helped his liver absorb food better. Keeping track of it all was tough.
We had a few scares as well. For instance, if he would get sick, we needed to really watch his temperature. Over 38° Celsius? Rush to the hospital. Fevers might be linked to liver failure. When he got the flue, that was very challenging.
Vaccinations were a problem. The standard program didn't apply. He couldn't get them as scheduled after his Kasai operation. We had to keep him away from people and crowded places. That was only for a few months, but it was nerve wrecking, to not be able to take him outside in the summer, after so many days in hospital. One of the final vaccinations he still couldn't get, as it is a living vaccine, and they didn't want to risk it so close to the transplantation.
Every month we had to travel to Groningen for a day, to give Alexander a full check up. That's roughly three hours there, and then the same back. At the halfway point of the journey we'd stop, as that would just be way to long for Alexander to remain in the car seat. Needless to say we are now quite familiar with the menu of Hajé restaurants.
Since Alexander was placed on the donor list, holidays were basically off the table. We had to be able to get into a car and get to the hospital as soon as possible. Travelling with all the extra equipment was a hassle anyway. So we lived with suitcases packed, just in case "The Call" came.
The periods in between hospital visits were times of relative calm. Finally a time to pretend to be a normal family. Which is tricky when you're constantly in crisis mode and juggling so many responsibilities. Yet we tried to make the most of it. It did help that Alexander was such a smiley, happy boy.