Last Night in Hospital?

It looks like the girls will be discharged from the hospital tomorrow to come home to their forever family.  They have seen all the specialists they needed to see for now: endocrinologist, geneticist, gastroenterologist, nutritionist, nephrologist, cardiac surgeon, ophtalmologist, and I probably am missing someone.

Conclusion: we still don't know, but Alagille Syndrome is in the lead.  They will be readmitted for a week early December to undergo a liver biopsy, here in Kingston.

Our goal at home is to establish a routine with the meds and the feedings, while providing for them as much stimulation as possible.  The girls have an 18 months old brain trapped in a 6 months old body.  Their bone density is the same as a 6 months old baby, and their bones are very thin.  They are on a regimen of high dosage of vit D and calcium and the endocrinologist assured us that the rickets will completely disappear with time.  We were warned that we could see quite a growth spurt within 3 to 6 months.  He also mentioned he is not convinced that they have Alagille.  He thinks the shape of their forehead could be caused by the rickets and that their liver condition could be caused by something else.  Well the liver biopsy will tell us for sure.

We spent the day getting ready for discharge, with many meetings with the medical team and the social workers.  Kingston General Hospital has been absolutely fantastic for the girls and us, and they wish to continue to help us manage the girls' health care locally as much as possible to minimize the impact on the rest of the family.  We already have a couple appointments scheduled, starting Monday morning for blood tests.

We are anxious to create our bubble, all 11 of us, under the same roof.  Michael is my eternal positive one, but it was great today to hear him tell me about his concerns, which turn out to be similar to mine.  Will we be able to keep the weight gain going?  That is our biggest worry.  Michael started to count their calories today and it reassured us.  The girls consume between 1200 and 1500 cal per day.  How much of that is absorbed?  That is the big question.  They need to consume food containing MCT oil, as it is pretty much the only fat they can absorb.  They love yogurt, but when they eat it, their stools turn mucousy: that kind of fat is not absorbed by their bodies.  A great source of MCT is coconut oil, and we are told that you can replace any fat with coconut oil.

We are getting more smiles, more cooing, and they are spending more time on their tummies, which by the way, has slightly decreased in size.  Toan, their 2 year old brother, loves playing with them and will provide a lot of physiotherapy....!

So homecoming tomorrow, if everything goes well.