Sunday, October 2, 2011

This Past Week

This past week was jam packed full with appointments. 

On Monday, I saw my internist, who made an appt for me for the day before induction to have a PICC line inserted in me since they will be taking blood/monitoring me every 4 -6 hours starting when I go in labour until 36 hours after I deliver.  Since the PICC line has both an in/out valve it will also be used to give me one of the two IV's that will be used during labour.  One is a drug for the baby, called Ammunol.  The thought is that by giving it to me, it will go through the placenta and go to the baby, bringing down any potential high ammonia levels at birth.  The second IV will be one of glucose for me, in order to keep my body regulated, give me calories, and not have my ammonia levels rise during labour and delivery. 

I also saw my dietitian.  A couple weeks ago I was prescribed citrulline, which is an amino acid, for the very first time.  I cannot manage to take the full dose of it...so after contacting the doctors, they said to 1/2 or 1/4 the dose just to get some in.  Citrulline helps with the process of properly turning the ammonia into urea, which with OTC the body often does not properly do.  My levels were extremely low.  I can only manage to take about a 1/4 of the dose they prescribed without immediately throwing up.  After reporting this, I have now also been prescribed arginine, another amino acid that helps convert into citrulline.  I will pick this up from the Sick Kids pharmacy tomorrow.

These aren't your normal supplements you can pick up at any drug store, and I feel fortunate that they are financially covered since they are quite expensive.

My third appt on Monday was with metabolic genetics at Sick Kids, who wanted to go over the plan for baby in more detail with me that day.  I also met with the genetic counsellor there, who was great.

At the metabolics clinic I ran into the other mom who has a baby with OTC as well.  I had met her a few weeks ago.  As of Monday baby was doing well at home, but this weekend I got a quick message that they found a liver for the baby!  As you probably know, a liver transplant is the "cure" for the OTC deficiency.  I'm assuming it is a cadaveric liver, and I'm also assuming that the baby is in surgery getting transplant this weekend.  I could be wrong.  I'm looking forward to hearing the updates.  Baby is currently 4 months old.  Perhaps I'll run into her again when I'm back at Sick Kids tomorrow.

I also had appts on Wed and Thurs, and instead of doing a ridiculous 2.5-3 hour drive back home in rush hour, only to do it back again the next morning, we took our daughter out of school for those days, and stayed overnight in a hotel.

On Wed, I met with anaesthesiology, which was a waste of time.  The other doctors involved really wanted me to to meet with them as a "just in case" scenario.  I've had two normal births without drugs in the past, and don't expect to need them this time.  Doctor was confused as to why I was there.  I told him it was as a "just in case" that the other doctors wanted me to meet with him.  Quick appt.  Yes, my back is fine for an epidural if needed, and my throat is fine if I needed to be intubated in an emergency.  Um. Great.

We also met with Mount Sinai's neo-natal department, which was a really good meeting.  (It made up for the one with anaesthesia!)  Very respectful, they will allow us to take time with baby without being rushed immediately after birth in order to hold, and take pictures.  In case Sick Kids PICU does not have any rooms available, they have ordered all the meds for baby on Mount Sinai's side as well, and will look after him in NICU until a room becomes available across the road.  When a room becomes available, they will be in charge of transporting baby from one hospital to the other (through the underground tunnel).

Then we met with our nurse co-ordinator who is great.  She has put all the stuff that needs to be done into a document for the nurses who will be in labour and delivery.  She liked the fact that the book our daughter had with her was HER very favorite book series from when she was a teenager. :)

On Wed afternoon after all these appts, we headed out to venture the subway.  It's been at least 15 years since I've been on Toronto subway!  We went to the ROM which has free admission Wed afternoons from 3:30 to 5:30pm.  You'd have to spend a month of going during their free admission times to see half of what is there!

On Thursday I had an ultrasound and met with my obstetrician.  Baby is measuring at 4lbs 13oz, although I take that measurement with a grain of salt, since I had an u/s the morning my daughter was born, and they said she'd be between 7.5 and 8 lbs, and she was only 6lbs 6oz.  They base the "weight" on length of bones...  My babies are long, but thin/skinny, and aren't as chubby as most babies...therefore less weight.  Still...at this point I've gained 3 lbs, and baby himself weighs more than that.

Tomorrow we head back yet again, to meet with the liver transplant team at Sick Kids, as well as the social worker from liver transplant.  We've met with them once before, but tomorrow they will go through the official surgical risks discussion with us, in case a liver becomes available really quickly while I am in the hospital.  This way it is done.  The social worker is our contact to get approval into Ronald McDonald House.  You can't get in at all without a recommendation from a social worker.  We'll see if she can help us out with finding funding for anything else too, eg travel and food expenses, or after school child care costs for our daughter since I will be in Toronto. Child care alone is an extra $300/month that we wouldn't have otherwise incurred, and staying at Ronald McDonald House is not free either...it runs $450/month ($15/day). 

3 comments:

  1. Sounds like everything is planned and ready to go for Baby! Not too much longer either! Have a good meeting tomorrow with the Liver Team! They're great! :) Emily (the social worker..I'm assuming you'll have the same one) is amazing and can find an answer to anything you need! Oh, if you're regularly taking the subway as part of your travel from Union she might be able to get you a free monthly TTC pass (they had them in the summer not sure if they still can get them). Doesn't hurt to ask! :)

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  2. Yep, it's Emily we'll be meeting with, although at some point we'll apparently also be meeting with Paul who is the NICU social worker. :)

    Are you down for clinic tomorrow? Maybe I'll see you?

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  3. keeping you in our thoughts and prayers, glad to hear that so much is being planned, and worked out. I pray that everything will go as smooth as possible for everyone.

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