Wednesday, December 21, 2011
Home Again in record time!
Yesterday one of Sam's regular carers went to Starship to be with Sam for the morning whilst Francis drove north to pick us up stranded at Snells Beach - we had a really nice 36 hours just the girls - swam, walked, fed donkeys, got locked in an automated public toilet for 10 mins (!), spa pooled, shopped, libraried, hot chips and breakfast by the pool. Francis asked me if I had missed Sam and without hesitation I said ,'No'....and then I realised that I didn't feel bad about that fact and that I didn't feel bad that I didn't feel bad! I spotted his abandoned 'Bee' and thought of him when his shoes poked out from under the couch, but it was so lovely to not have to constantly be thinking about drugs and schedules and making up milk and emptying drains and sorting dinner for the girls at some strange hour so that I could be able to do TPN at normal dinner time etc. The reality of living with any chronic condition is that it is there 24/7 - it's holiday season on the calendar but there is no holiday season in a chronic persons life. In some ways the holiday period makes life more stressful as there is all the added excitement and expectations that don't fit that well into an already tired and full programme. But it was lovely to see Sam again as Francis dropped me there on his way home with the girls, but I'm so glad I had 2 nights of unbroken sleep in a row..... aahhhh the precious gift of sleep!.
At 2.30 pm yesterday we were called down to theatre and at about 3.15 I gowned up and walked Sam in for his surgery. He was happy and bright, but totally knew where he was when he looked up and saw the huge surgical light and started clinging to me and calling ,'Mum, Mum, door, out....'. Thankfully the team are so amazing that I really am stuck with the same old metaphors of 'awesome, genius' etc and we lay Sam down and he was quickly 'asleep' and I left. About 1.5 hours later I found him in recovery groggy, with a new line in his foot (just for the surgery) and a dressing on his neck (surgical incision for his chest) and a new bright shiny central line in his chest. I'm not sure what life has become when we are grateful he has a central line and not a PICC - this one is more permanent and meant for long term use so we should not have issues of it blocking etc like the temporary PICC presented. If I use my brain too much it is sad to see Sam with cuts to his body and realising that he needs this so he can live....but I can't dwell on that - he is growing and getting bigger and developing and doing so well inspite of the above reality.
Yesterday was the first surgery he had where he didn't require oxygen afterwards. He only had one hit of pamol and then he slept from 4 til 7pm, then he was awake and it was a tough couple of hours as he wanted to be mobile and walking but he was hooked up to 3 pumps.....but we got through it even without 'elmo' as our tv wasn't working.....there is life without tv, but I have to say that it's so much easier having it on the ward when you are trying to keep your kid immobile.
So we got home today at about lunch time. He isn't quite 100%, bit tired at times when he normally wouldn't be and seems to be vomitting more than usual, but we'll keep an eye on him and hope it's just post op yuckiness.
Tomorrow a cot with movable base is being delivered for our use, after an assessment from the OT. We've been getting sore backs leaning over attending to Sam and he also is nearly out of his cot, but we don't want him to be as he doesn't understand the necessity of his lines yet..... so we hope the use of this cot will help us care for him better and keep him safer.
If we don't get to write before Christmas, please know that we are so grateful for your interest, care and prayers for Sam and us. We hope you get time to stop and think about your year, the highs and lows and to ponder the reality that God can be involved in your coming year - that fills us with hope and amazement and gratitude.
Enjoy the food and family and friends and we will see you in 2012.