On Friday a multi-disciplinary team meeting was held to discuss all the various aspects of Samuel's care that needs to be addressed in order to get him home. The list is extensive - training for us for various care procedures, meeting with the home-care nurse to discuss the many supplies we will need and what days they will visit (probably daily initially), medicine requirements, oxygen tanks, lists of contact details and what/who/how to respond when Samuel becomes unwell again ecetera....
We have a lot to do at home in order to get it ready for his arrival and have been re-arranging each room to try and make the right configuration of storage and happiness for all!
I'm feeling a bit overwhelmed. I was looking back through Samuel's photos and it is amazing how far he has come. As I looked at shots of his 'before and after' various surgeries and how unwell he was the emotions that I had then came flooding back..... to the point I actually had to stop looking. Tears of delight are just below the surface as I think that in a weeks time we could have Samuel home - it's staggering to comprehend. Yet tears of anxiety are also competing under the surface as I'm slightly terrified at having him home and caring for him. To wake up, all 5 of us in the same house after nearly 5 months will be fantastic. For the girls to skip home after school and all 3 of us to be here will be lovely. I can't wait.... yet his care, or my potential inability to care for him as he needs also overwhelms me. Francis & I have been largely doing all his care in the hospital for the past 3 - 4 weeks, so we are confident with it... but we are confident with it knowing that if we muck it up we press a bell and a nurse runs in...... To not have that safety net will be a challenge for us to step up to the mark and to care for him as best we can. I know we will have great support from the hospital home-care team, from the Starship team themselves and from family..... but it will be an adjustment to looking after Samuel in the home setting. To have looked after him in the calm of our single room in hospital has been great, but it will be very different doing it with the girls around and the demands of home.
In a strange way we've become so used to our routine of being in hospital that I think I will actually miss it! We're so used to living there and have gotten to know the amazing staff that they oddly feel a bit like family.... and although I don't want to be back there any time soon as that will mean Sam isn't well, I know that when we do go back I will really enjoy seeing everyone again. I feel a bit weird for even thinking that as shouldn't hospital be a sad horrible ordeal? But although we've been through some hard times with Sam, we've been through it with the staff who have loved and cared for him, which leaves me with an overall impression of a deeply profound and special time in our lives - of which the caring staff at Starship have played a huge part.
As you can see I'm rambling, emotional and slightly philosophical again.... so I shall stop and update you on Sam and our week ahead.
He has started taking a bottle again and last night took 15 mls - woohoo! He's having about 2 bottles a day, when he is cranky or has been off his TPN for 3 hours so probably his blood sugars are dropping. His GJ tube has been sprouting leaks, which has been patched up with glue and sellotape, but will be replaced by the radiologist on Thursday. We are really hoping he can get a replacement in easily, as the one he has in was after 2 attempts and was a 45 minute ordeal for Sam. Tomorrow Francis & I are doing Baby CPR training and will meet with the nurse specialist to go over practical needs/details to get us home. Sam also has oral thrush, so we have re-started him on an antibacterial drug which is given orally 3 X day.
Francis introduced Samuel to the joys of technology - well audio and visual rather than medical! Samuel seemed to enjoy his time with Thomas the tank engine or whatever it was!
Well that's enough for me.... Francis is with Sam tonight and this is my chance at home to sort out 'stuff'. We arrived in NZ 6 months ago with 4 suitcases.... now we have 'stuff' everywhere!