Tuesday

The word Tuesday is being bandied about on the unit. Yes, the plan is for us to leave on Tuesday. This means only two more full days in hospital, and the end to the limbo we currently reside in. I am alternately thrilled and panicked.

We have dreamt of this since the day we were last admitted: November 21st, 2010. By my calculations we have been on the inside for 48 days. In all of that time, Gavin has not been outside once. Throughout these days we have prayed hard and shed countless tears. But we have also laughed, in wonderful child-like giggle fits, and we have filled those days with play and games and Bean’s happiness.

We are now talking about home a lot with Gavin, and discussing all the things we will do when he is home. The other night we spoke about having a sleep-over at Bubby and Da’s house, and I told him that we would bring our things and get to have breakfast with them. Yeah, take the jammies, and my toothbrush he said. Sleep at Bubby’s house. This idea has really taken hold and we talk about it a couple of times a day.  We also talk about what we will eat and the toys we will play with.

There is a teeny, tiny little anxious voice within me that is asking how I will handle the realities of being at home with him, alone while Craig is at work, without our darling nurses to ring for help.  There will be cooking and cleaning and tidying to do. There will be oxygen tanks to manage and blood pressure to maintain! All of these things start to seem overwhelming, but then I remember, I will have help. I will have help as I have all the way through the last six months, in the form of my saintly mother and father, and my sister, and my gorgeous family, friends and neighbours. (I shouldn’t forget to mention as well our home-care nurses.) The truth is: we are going to need it, still. In many ways, home will be more difficult than hospital life.

I must not focus on what will go wrong, but on what will be right. We will have all of our clothes and things at our fingertips. We will have a nice sizeable space to roam around and for Gavin to explore. There will no longer be people coming into our bedroom all night, every night, with various monitors making loud bonging and beeping noises. There will no longer be stat calls in the night, interrupting my sleep and forcing me to send silent prayers to the respiratory therapist who is racing to save a life. Naptime will not be interrupted by inopportune visits from cleaners and such. Perhaps most importantly: I will control who comes into our environment. I hope that this more than anything can prevent him from contracting an infection. It has been sheer luck and massive amounts of hand sanitizer that have brought us this far. Keep smiling on us, universe, and help us get through the next two days fever-free!

We are largely being ignored on the floor, so we really might as well not be there. There is no fellow permanently assigned to our case, so we switch docs daily and rarely see them. This is a vote of confidence and means that they are just about ready to give us the boot. We are slowly putting everything into place, I met with the home-oxygen coordinator yesterday and got the run-down of how that will work. Again, I thank my lucky stars to be living in Canada. Our entire oxygen bill will be covered by two different agencies, otherwise we would be out of pocket $400 a month for the supplies. We will still have our daily visits by home-care nurses and all other necessities given to us by this organization as well.

Although Gavin has only been eating for a short time, we have pretty much exhausted the Meal Train options. Especially as no child of mine, under any circumstances, will ever eat a chicken nugget. ( I say this now, but who knows?) Given Gavin’s difficulties with certain textures, we are moving a bit slowly but seem to have hit upon a winner. And that food item is: English muffins. I know, I know, he’s supposed to be eating purees and such. He wants English muffins though. We have ordered one at every meal for the last 3 days, and he is almost eating the whole thing. I am just happy that he’s eating at all, the kale chips can come later.

His eyelashes are now a little fringe, and his eyebrows are starting to look a bit different, as if they were ready to bloom too. His head remains stubbornly bald though, which of course worries me, but I then take a deep breath and focus on more important things. His face is actually looking a bit chubby, and he’s put on about a kilo in a week or so.

Two more days. Two more days. Two more days.