Wednesday, October 12, 2011

Meetings with Transplant & Social Work

I realized I never posted about our meetings with liver transplant and social work last week.

We were supposed to meet with two of the liver transplant surgeons, along with our co-ordinator.  One of the surgeons was unable to meet, because they had a cadaver liver transplant that day, which of course, you can't plan ahead of time more than a few hours!  During our meeting, our transplant co-ordinator got a page, and said "Part of my job is going to pick up the organs when they are available, and I need to leave to go get one."  They knew it was going to be ready for her to pick up soon, since it was for the surgery that the surgeon was called into.  Off she went, changed into her scrubs, and went across to one of the other nearby hospitals to return with a liver!  Not a job responsibility I would EVER want.  It made for interesting conversation when she returned.  She never takes the street, always takes the tunnel system, and always brings a group of people with her.  She brought 4 this time.  The surgery they did that day was number 25 for the year at Sick Kids.  They typically do between 20 and 25 liver transplants a year, but apparently this year has been busier than normal.  I suspect that part of the reason they are busier is because urea cycle disorders like ours are being treated much more often now with liver transplant, particularly at young ages. They know it works as a cure, and with each one the surgeons perform, their experience is growing. 

We also met with the liver transplant social worker, who was GREAT.  She will apply to Ronald McDonald House for us starting on Oct 31, and will phone in each day over the first few days to keep us on the waiting list since we will be busy.  Hopefully we get in sooner than later, because staying downtown Toronto is expensive.  Worst comes to worst, I can commute it until then, but the 2.5 hour commute each way won't be fun.  She is also going to apply to the David Foster Foundation for us, although nothing is guaranteed.  This foundation helps families with children undergoing transplant with some of the many extra expenses that come up.

We told her that we weren't preparing in any way for the baby to come home.  We are taking everything day by day.  If baby comes home, we will do a major shopping spree at the time!  She told us that in typical Jewish culture, there are no baby showers ahead of time, and nothing is bought until the baby is coming home from the hospital.  I did not know this, but apparently we can say we're following Jewish tradition. :)

I'm off to Toronto again in the morning...  I'm hoping it will be a fairly quick afternoon of just a couple appointments, and that I can make the 4:30 bus back home...otherwise I have to wait around until the 7:30pm bus. I have ultrasound and obstetrician appointments scheduled, but I seem to always end up with extra appointments while I'm there.  One of the things I will be asking for is a doctors note/prescription for a breast pump.  Since baby can't drink any breastmilk until after transplant, I'm going to see if I can pump.  Don't know if I can, but we'll see.  With a doctors note that it is medically needed, my work insurance company will pay up to $200 towards purchase, or 3 months of pump rental.  I will purchase one, probably from Sick Kids hospital.  Ultrasound will also give an estimate of how big the baby currently is.  Two weeks ago, they estimated 4lbs 13oz at the time.

I set up a Facebook page that tells about how we are looking for a donor for the liver.  If you search "Baby Boy Babcock" on Facebook you will find it, or you can find it Right Here.  Feel free to join the group and share the link.  I know that we've had a few people apply, but I don't know if any of them will be considered successful matches.

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