Monday, October 19, 2009

Final week in Starship?












































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!






12 comments:

Sarah said...

What a beautiful picture of the two of you having a wonderful mother-son moment. You are incredible Shirley, what you've been through, the journey you've travelled so far - but this is just the beginning! You know you have nothing to fear - our Heavenly Father has sustained you this far, he's not going to leave you now, not ever! And neither are we - your family are very much with you on this journey. Sleep well SIL. Much love Sarah x

Anonymous said...

Wow, wow , wow. who would have thought this time would come! What a great journey and the next step is just beginning. Our love to you all as you prepare for life at home. You guys will be just wonderful and your care will be equal to the nursing staff (if not better!) Much love to you all..from the deep south Crumps. xxx

Anonymous said...

Yes Shirley - the picture of Samuel smiling at you is just so beautiful - brought tears to my eyes. What a miracle, you are going home with your lovely baby - we have certainly seen Our Heavenly Fathers love these five months, He has sustained you and the family,and it is not going to stop now. We have all been on this journey with you and your family and it has increased my faith, and I am sure that of many who have been reading along with me, all your wonderful blogs.Take care dear heart - you are so often in my thoughts and prayers. Much love - Carole P.

Anonymous said...

guys it is really exciting to think that very soon you will be five at home. I too was thinking back at the early days when things seemed so uncertain and little Samuel was covered in tubes etc, now look at him chatting away and smiling at the workld around. wonderful and amazing.

Of course it is also daunting bringing him home and we understand the worry and concern you have, but you guys have done amazingly well so far and i am sure you will be able to cope.

I bet the girls are excited too. it will great to be a family together at home. more special days ahead for you all. this comes with our love MERRW

Samantha said...

I love the photo of you with Sam - so precious. Oh had to laugh at your comments of feeling sad leaving hospital! I so know how you feel. After long stays I too felt weird about leaving my hospital family. But - believe me you will love being home even more and even though its a bit scary and daunting at first you are not doing anything different to hospital but you have a lot more freedom! Everyone adjusts and kids especially so! Hope to catch up on thursday when Lara and I are on the ward.

Anonymous said...

Shirley - You and Sam and your family are in my prayers every night. I am so happy to hear that Sam may be going home soon. Love, Nancy McLoughlin

Elaine said...

yay! Yay! Yay! wahoo that's very exciting about Samuel going home soon, I bet the girls are getting very excited! all the best for 'learning' all the info that is needed!
We'll be up with our tent sometime in the new year to visit...all 5 of us!
Catch ya, love Elaine

The Heslop Family said...

Awesome to talk the other night, Shirley, and to hear that soon you'll all be at home. You'll be fabulous - two very intelligent, capable parents. Samuel couldn't be in better hands! We'll be over soon with some toys for the little man. Love to you all.
Bron and the boys xxooxxoo

Anonymous said...

what lovely photos and just caught up with the video, good to hear your voice as well as samuels. hopep the training is going well, just a step at a time...love merrw

Anonymous said...

great to hear that you may be going home at last! what an answer to prayer, we are still keeping you in ours! lol

Ben and katherine

Nicholls's said...

What an amazing place to be in - about to go home! It must seem as daunting as it does exciting but you can definitely do it. Praying for you all in your journey. With love and prayers. Melvyn and Sally

Margo said...

ditto everything that has been said

lots of luv the millens :)