Sunday, July 12, 2009

Face to Face

Today was special in that we were able to have a decent amount of time enjoying Samuel with his eyes open and alert, without his face being disguised by tubes. He remains on CPAP breathing support but is requiring very little oxygen and was able to be off CPAP for 15 - 20 minutes during his wash and bed change (see video clip). Being able to get face to face with my son was an intimate experience that has been a long time in coming.

Since the previous blog, Samuel's latest blood tests results came back showing that his creatinine had further lowered to around 64 and his haemoglobin remained stable within normal parameters at 120. His bladder is protruding further from the vesicostomy and is about the size of a golf ball. It is causing him discomfort at times and is not draining urine as was intended. The surgeons want to operate tomorrow afternoon to reverse the vesicostomy by reinserting the bladder and closing the hole, which is around a two hour procedure. In the morning they will inject dye into the kidneys to determine the flow of urine from the kidneys to the bladder and to identify any potential blockages. This is needed in order to help the surgeons consider where to go from here as the kidney drains are not a long-term solution.

Tomorrow there will be a multi-disciplinary meeting of all the specialists involved in Samuel's treatment to review his progress and consider how to move forward. While he is looking as well as he's ever looked, we are conscious that he still has serious complications that could see him deteriorate very quickly. It is also clear that any further surgical interventions will entail a high degree of risk and we will need to weigh the risks against the potential benefits for improving his condition. However, Samuel has proved this week that he's prepared to fight for his life, and as long as he's fighting, we'll be working with the medical team to give him as much support as possible.

We are mindful of the many hundreds who are following Samuel's progress from 40 countries and we just want to let you know how much we appreciate your concern and interest in his ongoing treatment and how we are coping as a family. We don't underestimate the power of prayer to move God's hand
and so we ask for your continued prayers as Samuel enters his 6th week of life with fresh challenges to overcome.

With love and appreciation.


Anonymous said...

In Cambodia and managed to get access to the internet to read your blog. Wow, what a week. Lovely photos and heart felt postings. Continuing to be thinking of you and praying for you all. Hilary, Mike and girls

The Eckrotes said...

Learning more what it means to "rejoice with those who rejoice" and "mourn with those who mourn". The rollercoaster ride has provided both. We count it a priveledge that you let us in to the intimate details of your thoughts and feelings. We have learned so much through watching you. It pains us greatly not to be able to be there with you all right now. You are all so loved!

Anonymous said...

God moves in mysterious ways and we are in HIs care always.
I rejoice that Samuel has made it though another week and blessed us all with his courage and strength, even in one so young.

And may you continue to have the family andf friends who are part of your new 'normal' life.

Go Samuel!

The Heslop Family said...

I agree with the Eckrotes, guys - it has been an honour to share your thoughts and feelings, and to be updated so regularly on your precious son's progress. We too are learning so much through watching you.
We are praying for Samuel's day today, that the surgeons can see the next step in his care, and those beyond. And that Samuel continues to hammer those odds! God bless your family, Francis and Shirley.
With much love.

Margo said...

How wonderful to see the video and hear Samuel make those beautiful baby noises! And to hear you speak to your wee man. So heart warming.
Wow what a time you are having. You are in our thoughts and prayers each and every day.
Love Margo xxxx

Raewyn said...

Thank you for the little video clips and photos. Just gorgeous. Nice to hear Samuel's cute little noises and his mum crooning to him.
Love RAewyn and ANdy

Anonymous said...

How gracious the Lord has been...
Our prayers continue with you today for the wisdom and strength needed...may God work in all that are involved...even to salvation for some :)
The photos are lovely too...thank you once again for being willing to share...our love to you and your children...
Gordon, Coralie & Family

Wongs said...

Have just sat and read all your bloggs. I am overwhelmed by all that has happened indeed it is a roller coaster for you guys and I just want you to know that you are in our thoughts and prayers. We love you all so much and miss seeing you. Shir it was like sitting down listening to you so thank you keep blogging!So glad we have a God who holds everything in his hand. love you kirsty xxxxx

Lea said...

It has truly been a rollercoaster, as you say. The latest news is wonderful, and he looks good - those eyes!!
I have the picture of you both with him up on the board in front of my desk - not that I need any reminder of you all. Often in my thoughts and prayers

love and blessings


Tina said...

What a privalege to read your blog and share a little of what you guys are going through. We continue to pray for you all as do the rest of the Mc family. God gives us strength in way we never imagined or understand. "Be still and Know that I am God".
All our love prayers and support,
Phil and Tina

Elaine said...

Wow what a fighter & ever so cute... he must be related to me! So pleased Samuel continues to amaze us, give him & the girls big hugs and kisses from us. Thinking of you, and thanks so much for this blog, is really nice to keep up to date and think about what you are going through.
Love the Lamberts xx

ana said...

Kia ora whanau. We have been following your posts closely over the last week and are in awe of your strength and are cheering Samuel on. You are all in our thoughts constantly and I even prayed to God for the first time in over a decade, the other day. Ma te atua koutou e manaaki. Ana, Greg & Taokahu

Leyette Callister said...

Hi Davys
Thanks for the informative updates which save a lot of repetitive phone calls for you giving out the same information. Your little man has a lot of fighting spirit. Would love to have you guys over for dinner while the holidays are here - any chance? Please call or text me when you feel like it.

Lots of love
Leyette and Paul

Anonymous said...

Francis, I hope that you coped with all those "Crump" women being there.How are Kylie's gymnastics lessons going? And Uncle Selwyn's etiquitte lessons?
I never knew that NZ felt so big before - the Catlins seems like it's miles from you but you are never far from our hearts.
Love and prayers from Marion and the Catlins cousins.