Tuesday, July 14, 2009

What a difference a week makes

Francis is frantically typing on his laptop behind me, trying to finish a masters paper, so I get the job of the Blog tonight.

I am writing from home, as today we moved back from NICU as Samuel is quite settled. It is lovely to be back amongst our stuff, having normal meals, doing the bed/bath routine with the girls.

Last night (after the blog entry) Samuel had a blood transfusion and today Samuel was weaned off his morphine, after the surgery of yesterday. He was extubated at 11.30am and has been coping on low-flow oxygen since. Mostly he had a very settled and uneventful day, dozing through his many visitors.

After the multi-specialist meeting this morning, the neo-natologist met with us to talk us through all that they had discussed about Samuels complex condition and options for treatment and his care. We talked through long-term options as this directly impacts decisions being made with his current day-to-day treatment. If Samuel is to live and thrive, he will need to have a multi-organ transplant and the impact of this would be huge for us as a family as well as Samuel. It is a complex issue that putting in a short blog would not do justice, but suffice to say that there are risks and costs on many different levels both physically for Samuel, financially and emotionally on us all. We agreed that we want to give Samuel every opportunity to fight on and receive treatment, knowing that it will be difficult and there is no certainty of success.

So we talked through step-by-step surgical interventions that Samuel would need to undertake, with the understanding and agreement that at every step we would stop and assess the impact on Samuel before we continued on, fully aware that at any point Samuel may not be able to continue. It was an open and frank discussion and we are so grateful for their honesty, insight and concern for Samuel.

With the above in mind, the surgeon would like to take a CT scan of Samuel's abdomen on Thursday (under general anaesthetic) to determine the best option for surgical intervention with his kidneys. Currently he has a catheter directly into each kidney, but it is of urgency to remove these (this was a temporary measure to relieve the pressure) as they are at great risk of infection and the underlying problem needs addressing. So he may have the surgery straight after this on Thursday whilst he is intubated, or possibly on Friday.

The deceptiveness of Samuel's illness is frustrating - when Samuel looks so well and has improved so much, yet internally he has so many problems and no easy solutions. Samuel has responded well to various interventions and surprised us all. At what point do medical interventions cease to be kind to Samuel? How will we know when Samuel has had enough? We have so many unanswered difficult questions which Francis & I agonise over. And there just are no easy answers, so we hope and pray that we will be guided by God, who has the big picture.



tau said...

hey beautiful people!
just read your latest blog - will be praying for wisdom and clarity of mind in all the decisions you make...
my heart and thoughts are with you.
big big loves to you all!
from the Walkers
p.s. Happy happy birthday for tomorrow Frank!

Rachel said...

Great blog once again and thanks for allowing us to share the journey with you; what a handsome little fighter Samuel is! So glad to hear you've been able to return home to spend time with Jasmine and Candace; continuing to pray for you all as you balance the many different demands and decisions - and have a great birthday Francis! Lots of love to you all, Rach x

Desarei said...

Gods wisdom and guidance for you both as you grapple with the questions of care and intervention for wee Samuel...Heavenly Father I pray your gentle, healing and guiding hands upon this family of yours,Your knowledge and skill to be with the medical staff working with Samuel. Your presence and comfort to surround Francis, Shirley, Jasmine and Candace, and Your peace to follow their every thought, discussion and interaction. Kia Kaha Little Man, in Jesus name, Amen.

Samantha said...

If this helps ... although the interventions are and will always be heartwrenching for you, Sam will not know any different. He will cry and fret and then be calm and smile at the next doctor or nurse he sees. Children are so forgiving and adaptable. It is you who will suffer having to watch it all and be of comfort to you wee baby when you feel you just can't cope any more.

Babies and children have such a different attitude to us. Sam will show you the way. Your hardest part is being strong for him. Don't look ahead, take the information the doctors give you and know that things change constantly in kids health - for the good as well as not, so keep faith and hope.

Lara and Aria will show you that children are pure beautiful souls who forgive and embrace life no matter what it throws at them. Sam will be the same.

Lea said...

Happy Birthday, Francis! No doubt, it was made a much happier day for you with Sam's bounce back fro his latest surgery and his evidently much improved state. What a boy, and such resilience for one so tiny - inbuilt, I guess, so Sam probably has some mighty and brave ancestors to thank for that.

I'm sure, too, that Candace and Jasmine are delighted to have you home again for all that so important routine stuff of every day.

Go well, guys, and know that God will help you all on this testing journey.

love and blessings

lizzy said...
This comment has been removed by the author.
lizzy said...

Hey you guys
Praying for wisdom for each and every decision you need to make. And for peace that passes all understanding to be deeper and more intense than anything. Viv is a great friend... forgot she would be with you...
Thinking of you lots, praying for you with the kids every day.
Love you
Liz x

The Heslop Family said...

We continue to pray for you all as a family, and for God's guidance over the whole situation. For Samuel, that he thrives, and for God's miracles in his life. And for his Mum and Dad - that you continue to have peace and know that you are doing a fabulous job, with ALL your children!!
Love lots, the Heslops xxoo

Elaine said...

hey there! glad to hear that Samuel seems more settled than he has been. Happy Birthday Francis, we hope you have a nice day!
All the best, Love Elaine & co xxx

LMC said...

Hi Shirley
Lee-ann Coutts here (nee Beange).
Your beautiful little man must be a fighter! Our thoughts are with you.
Love Lee-ann, Marty, Abbey, Regan & Jack

Anonymous said...

Glad to hear that little Sam has been feeling bit better than the last few weeks. Jasmine and Candace are looking good but not as good as my Dad (Uncle Ron). To Uncle Francis, Happy 43rd Birthday, Aunty Shirley thanks for letting Mum come home cause Jackie isn't crying anymore about her hair getting brushed.

Caleb, Marcelle and Jackie In the Box.


Anonymous said...

Hi Guys,
happy birthday Francis - Sorry I had you down for it being on Monday..oops!Hope you had a good day. Lovely to hear the good news from you. A wee battler Sam is! Our prayers as always. Elias wanted to buy Sam a 'Thomas the tank engine'.
xxx to you all.
The Crumps

Rosslyn Hill said...

Happy Birthday Francis! Just to let you know that we continue to think and pray for you all. Matthew (8) remembers to pray for Samuel in particular. He looks so handsome and I love the little video of him yawning, crying and then seemingly going back to sleep with a contented sigh! Great that you are able to be back at home and enjoying a little of life's normal side. Lots of love Ross, Geoff and the boys, xxxx

thecarlows said...

Thanks again Shirley for the latest blog, i must say your blogging skills are very impressive.
It's great to see that Samuel is looking better and appears to be responding well. Look forward to speaking to you soon.

Love us all.

Margo said...

I was thinking of you yesterday on your birthday Francis.
I agree with all the above prayers.
Think of you often.
Wow Samuel has a beautiful face :)
Margo xxxx