On the Outside

Our house is a very, very, very fine house.

– Graham Nash

We are home. Everything is overwhelming and busy, but I’m slowly starting to be able to handle it. We’ve been home for little more than 48 hours but it already feels like an age.

Discharge Day was not easy. I spent the whole day packing, moving things, running errands and consulting with various people. We finally got the go-ahead to leave at around 3:00, had all of our meds ready, and received our portable oxygen tank. (It comes with a shoulder strap!) I felt like a runner forced to wait in the blocks for 6 hours waiting to hear the starting gun go off. Bubby, Auntie Loz and I wheeled Gavin out in his stroller, bundled up in winter gear for the first time this season and marched triumphantly through the hospital to the car. It took Lauren and I about 15 minutes to get Gavin into his car-seat with his oxygen tank settled on the floor. You’d think we were getting ready for a lunar landing.

We met Bubby at home, and got Gavin settled in his play area. He immediately said, “make a cake” and got up and with shaky steps made his way to the pantry cupboard to get out his ingredients for “baking”. Seeing him like that, in his old position, perusing the contents of the cupboard, was enough to push me over the edge. Tears flowed. Happy ones.

I think I have finally found spots for most of Gavin’s things and the place doesn’t look quite as toy-bomb-went-off as it did on Tuesday. We have been very, very hectic though, with visits from home-care, blood pressures to take, meds to draw up, oxygen drop-offs, and more. Our first full day yesterday knocked me out as I raced around the entire day, with always another little task to complete.

Gavin has been unbelievable since being home. He walks around the house with just a little hand-holding to help him along. Taking steps on his own is still a bit of a challenge. He also wants to try walking up the stairs again, and stands for a half hour or more at a stretch while playing. You must remember that this child did not get out of bed for more than six weeks and has had very limited physical activity for the past six months. He amazes us all. He does get tired though and then wants to sit down or be carried.

Carrying him is finally starting to be an issue, as he seems to have put on a little bit of weight in the last couple of weeks, and has now gone over 13 kg for the first time in six months too. There is a little bit of chub around his face and tummy, but this is also a side-effect of the steroids he is on. It does serve to make him look a bit less frail. He is showing more and more interest in eating, and when I get a free second from my nurse-ly duties, I intend to concoct some more interesting meals. So far the major staples have been cheese, hummus, and bread products. For dinner tonight he ate macaroni and cheese, and carrots. He has not been able to eat a proper vegetable in a very long time, so this was thrilling. I am dreaming that we may be able to get rid of the NG tube sometime in the undistant future.

It is regrettable that he can’t help me with the cooking, as we have a gas stove, and the oxygen must be kept away from it, for obvious reasons. Like everything else, he accepts these limitations that are put on him with such enduring grace. It is so humbling. Apart from these inconveniences he loves being here and having visits from Da and Bubby.

Today the sun made a brief and brilliant appearance, and Bubby and I rugged him up in snowpants (which he thought were hilarious) for some fun in the snow. Unfortunately, I was called away by the washer repair guy and missed most of the fun, but I did manage to get a couple of photos. In hospital we always talked about playing in the snow when Beanie is better, and he was always so excited to see that it was snowing outside. Amazing to see that dream realized. After he walked all around the yard and inspected things, he agreed to go out for a walk in the stroller for the first time since being home. Secretly I hoped he would fall asleep as he always used to, as naptime has been a struggle lately. Less than a block away he looked at me and said, Close eyes and fall asleep now. And he did.