Home where he belongs

Farewell to Samuel's nurses and hospital room

Samuel is sleeping in his cot in the front room of our house as I write this blog at 11.15pm. It's been a momentous, surreal, stressful and physically/emotionally exhausting day but it's so good to have him home where he belongs. After packing up 5 months of accumulated plates, clothes, dolls, papers, fridge out of Samuel's room....and with suitcases full of medicines, syringes, lines, pumps....we said our goodbyes to the wonderful nursing staff and doctors and exited Starship about 2.45pm. Samuel arrived home to family waiting to welcome him and help us settle him into his new room. There wasn't much time to celebrate as we had to unload all the medical supplies and get ready for his first TPN hook-up at home, which was being observed by a representative from the TPN (intravenous nutrition) supplier who needs to ensure that we are taking every precaution to prevent the possibility of an infection through Samuel's central line which his TPN runs through. Typically, having done Samuel's TPN for weeks, tonight we discover a major air bubble in the line that required Shirley to have to disconnect the line she just spent 40mins connecting, in order to flush the air bubble out of the line. With Samuel getting his dinner, we all sat down to our first family dinner at home, although Samuel seemed to feel a bit left out and was quite vocal through most of the meal. Then we went to connect his milk that runs into his small intestine, only to discover that the newly supplied pump wasn't working. So it was a quick trip back to the hospital to grab a replacement pump for the night. And then I just went to change over his oxygen cylinder to discover that the second cylinder supplied from the hospital is faulty and isn't sealing properly when you attach the regulator. Fortunately we had some extra cylinders delivered today to be used in emergencies, which tonight qualifies as he wouldn't get through the rest of the night on the one cylinder and he drops down to 85 - 88% oxygen saturation when he's asleep and not getting at least 0.5ml of oxygen. So an eventful day with the inevitable teething problems, but the important thing is we're all here under the same roof - a step that 3 months ago seemed almost beyond the realms of possibility.