We have learned one thing about those little girls, they are unique. And they have to do their thing, their way, and on their own schedule.
First off, the surgery was a smashing success. Foley tubes in, no complications, and with the help of the ever so friendly staff at KGH led by dr. W, we went up to our familiar room after a 24 hour stay in ICU to settle in for a maximum of 2 days recovery. Now this is where the fun starts. First day went well, feeds going in well, being well tolerated, tube site nice and clean, it really looked like we would be out the day after. Phu-Phu (Phuoc) decided otherwise. She started a fever, which we later discovered was the same virus some of her siblings had had. That kept us in for an additional 2 days as we went for more investigation. After all that, we ended up going home on Friday.
Saturday started out as normal and then Binhie (Binh) decided that this tube was not fit for her. The hole became progressively bigger, and bigger, and the leakage became progressively grosser and grosser. Gastric contents pouring out with her moving everywhere. So needless to say, Sunday we were off to the ER. The hole went from the size of a pea to the size of a ''loonie''($1 Canadian coin). After a brief stay in the ER, we were back to our very familiar room, same floor as usual. An important note to this event, Binh cried from the moment she left the house for a steady 24 hours. I guess she missed her sister... And to add to the fun, Binhie decided to break a fever, which placed her and daddy in isolation. By the way, the fever was caused by the same old virus that had been making its way through the family. In the mean time, at home, Phuoc was lethargic, refusing any contact, missing her sister.
However, all things happen for a reason, and Binh received a much better replacement tube, a Mic Key type tube made of silicone. So again, things started to look up. At the same time, Johanne was at home with Phu-Phu, whose hole progressively got bigger and bigger, with leakage grosser and grosser. Monkey see, monkey do. Same thing. Minus the fever, minus the hospitalization. Phu-Phu got a new tube as well. Same as Binhie's. Again, Binh and daddy were getting ready to go home. And on that perfect day, daddy woke up to a very bloody leg. Binhie decided to rip out her IV in the middle of the night, which caused quite a lot of blood leaking for a little girl. The nursing staff managed to get the situation under control, IV restarted, and back to sleep. And that's when the real horror show started. Binh started to have an innocent nose bleed which blossomed into a code call over the hospital PA system calling the emergency team to our familiar room. To be clear, Friday the 13th Movies had less blood involved. So needless to say, we did not go home.
The hospital did some preliminary tests to be sure we would be safe to travel to Toronto. I forgot: I am putting the cart before the horse. We had a scheduled appointment with a team of specialists in Toronto on March 28. Medical people in Kingston were doing their best to ensure we could make it.
So in the end, everything worked out, Binh just had an epic nose bleed and we were cleared for a road trip to Toronto. Both Mom and Dad were looking forward to this trip. We had our outstanding friends in Kingston ready to look after the kids that day, we had the vehicle ready, everything was packed and ready to go, mom was even showered at 3 am when Liam announced: ''I think I'm gonna throw up...'' Plans tend to change quickly in this family. And it's true what they say: you know who your really good friends are when you can call them at 3h30 am and say hey, wanna go to Toronto??? And they simply say ''All right, I'll be ready in an hour''. So the van left for Toronto with daddy, the twins, big sister Fiona and really good friend, and mommy put back on her pj and snuggled with poor little Liam. P.S. Liam turned into the ''Pukosaurus'' later that day. Our new type of dinosaur. And then Noah needed to be picked up from school, sick as well.
The drive to Toronto was perfect. We arrived at Sick Kids Hospital without an issue. We met a complete new team of doctors who specialize in Alagille syndrome. Their case was discussed at length, followed with the usual blood tests and an ultrasound. Really nothing new came out of the meeting. The team in Kingston has been doing a very good job with the girls, but this new team is going to monitor the girls' bloodwork and we will be seeing them again in June. The common theme seems to be that the girls need to overcome some of their nutritional issues before they truly can make a clear assessment and provide truly long term treatment options.
To wrap it up, we are all back home. Their site is now healing quite well. It is now the size of a nickel ($0.05 Canadian coin).
In closing, we cannot say enough how amazing the surgeon here in Kingston is. She is truly committed to her patients and has a quick wit and is just a genuinely nice person.