Last night

It's hard to believe that this might be the last post written from SickKids.  This has been my home for over three and a half months.  We've had superb care here and I like it here.  It will definitely take a little time to transition back to Kitchener.  I'm sure I have a lot of underlying comfort just knowing that there are nurses outside my door here.  I never envisioned bringing Josiah home unwell.

We've already said some goodbyes to amazing caregivers and other families.  One couple whom we regularly pass when we push Josiah in the stroller made us his name using beads.     

I heard last week that I had four big boxes of my milk in the freezer downstairs.  I found out this morning that it's actually ten big boxes.  We're going to take home five boxes tomorrow and we are hoping that it will fit into our freezer and that of my parents.  They will store the other milk for me here.  My weaning off the pump is going well.  Today I pumped three times for three minutes each time.  It will be nice when that's finished. 

Graham dropped off our prescriptions at the pharmacy today.  Our nurse practitioner said we won the award for the longest list - it was three pages.  He's now on benadryl to help with the itchy eyes due to the morphine.  We have the draft copy of our discharge summary and that is seven pages. 

Our highlight today was seeing the imaging from Josiah's MRI.  We saw how his pulmonary veins are narrowed.  The expectation is that these veins will continue to narrow which would decrease and stop oxygenated blood from going to his heart from his lungs.  We saw the imaging in the multi-media room (it looks like a mini-theatre) where the cardiac team meets for its conferences when they discuss different patients.  It was nice to see the room where decisions were made about Josiah.

Josiah's highlight was probably the two stroller rides.  He slept quite a bit today and we gave him more morphine.  We're going to start giving him regular doses at 7:00 AM and 7:00 PM and then whenever we want as the need arises.  It took so long to wean him from the morphine and I remember when it looked like he was in withdrawal. 

I'm going to miss sleeping by his side.  He's in a big hospital bed now but at home he'll be in a crib.  CCAC from Kitchener called us tonight to arrange delivery of all of the supplies we will need.  A nurse will drop in tomorrow night and then shift nursing will start on Monday.  Shift nursing is such an incredible blessing for which we are so grateful.  We thank God for this gift and we also realize what a blessing it is to live in Canada.   

I can't wait to give Isaac a big cuddle but he'll be with his grandparents tomorrow night during the transition.  

We're heading to bed now.  Tomorrow at 10:00 AM we'll have training on using a sat monitor.  Thank you to everyone who has prayed for us.  Please continue to do so as we all move home.

Blessings,

Elizabeth and Graham

p.s. We can now pick up Josiah under his arms as it has been long enough since his surgeries.  It is a much more convenient way to pick him up for cuddles.