So this is my last post for 2013 - we head off on holiday tomorrow and computers are being left at home!
Since I last wrote Sam has had a very busy month of appointments and changes to his regimes. We have had immunology tests (still allergic to milk and nuts, but not soy), surgical reviews (Surgery scheduled for March 5), gastro appointments and training on poo recycling - YES, you read that right!
So in brief (as I need to go and pack), Sam is now on a prophylactic antibiotic for his UTI's as he was having them back to back. This is once a day med, which hopefully is what he needs to stop getting sick. On top of this I had training on doing daily bladder wash outs. Each morning I heat up 50 mls of saline (salty water) and inject it into his bladder and then let it drain out again - this is to hopefully stir up any sludge sitting on his bladder lining. It isn't hard to do, but Sam hates it as it's uncomfortable and he screams for the duration..... but we're all getting used to it.
After a multi team meeting it was agreed the benefits of surgically stitching up his small and large bowel outweighed the risks, and March 5 was pencilled in. To get his large bowel ready for 'food' to go through it, once a day I syringe up 30 mls of his runny poop and have to put a catheter down into his large bowel and push the poop in. Visions of mess and chaos thankfully have not eventuated and this procedure seems to be working out well. Already we are seeing daily 'smudges' in his nappy (this large bowel has never been used as was severed in his first surgery at 12 hours old!) and Sam is aware of the feelings that go with it... which means that hopefully it won't be so hard to toilet train him when the full force of 800 mls a day of milk goes through post op. We also need to take his runny poop and smear it on his nappy and put the nappy back on him to help his bottom skin toughen up - I thought this was some weird Dr joke when they first told me, but apparently not. We will do this, but I think I'll wait until post holiday as frankly the thought of it just doesn't fit in to my nice romantic restful holiday ideas.
Hoping I haven't put you off your breakfast and you are still reading, we are really looking forward to Sam having this reversal surgery because if his system copes with it it will dramatically change his life.
We come to the end of the year weary - his nights are still hard work and if it's not him, it can easily be one of his pumps having issues, like last night which saw us up at 2am attending to an alarming pump - after 45 minutes and re-priming lines etc we gave up and hooked him off and today he will have to be hooked up for another 4 hours to compensate...oh well, anything to keep us out of Starship and together as a family.
But we are so thankful for how he has developed and grown, he continues to make us roar with laughter with his loveable antics and we can not express how full our hearts are to God that we have him in our lives and that He has sustained us.
We are looking forward to stopping and taking stock of 2013 whilst on holiday and making sure that next year we work even harder at making time for each other, and how to nourish our whole beings - physical, spiritual, mental and emotional, so that we can fulfill all that God has for us to do next year.
Thank you for your care and support of this special little man and our family and we wish you a blessed Christmas season.