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.

8 Responses to “Tuesday”

  1. Lisa says:

    Home, Sweet Home!

  2. Auntie Melanie says:

    Oh Erica – I cannot wait for your 2 days to be over! – I love you all and when you are ready – I’m coming to visit, play, give you a break or whatever you need!

    Thinking of you over the next 2 days-no fever, all good things and leave with the flurry of fan fare you all deserve

    I Love you
    Auntie Melanie

  3. Cherie says:

    Oh finally home sweet sweet sweet sweet home! So happy for you three! Finally you may all get some very much needed deep deep sleeps.

  4. Amy Zammit says:

    we are so thrilled for you to be going home! Keeping the good vibes going on avoiding infections. Love Amy, Phil, Phoebe and Tom xo

  5. Aunt Karen says:

    Everything will be wonderful…have faith. xxxooo

  6. Gail Thomas says:

    Very happy for you all and looking forward to hearing how Gavin enjoys being home. My mother uses oxygen at home overnight, and finds it easy to manage. I am sure you will both be so delighted to watch Gavin being happy in his own home again.

  7. Mairi says:

    There’s no place like home:)

  8. Meaghan says:

    Just catching up on reading your blog after being away. I know that you have made it home and we are very happy for you all. I hope that it is all going well for you. We think of you all the time!
    I had to laugh when I read your comment about chicken nuggets. Stick with it long enough and you know that he won’t want to eat one when presented with one. I never gave my kids chicken nuggets either especially after seeing Jamie Oliver’s TV show on them. Every now and then they appear at children’s b’day parties and my kids just look at them like they are some interesting inanimate object. They don’t even know what they are and when asked if they would like to try one they refuse. Yeah!! Hot chips on the other hand….

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