Today Samuel had his breathing tube removed, as the doctors felt Samuel should cope with breathing on his own. Around 2pm, the tube was removed and we were relieved to hear Samuel crying for the first time in 12 days. Although a little hoarse and in discomfort, he managed to cough and wriggle which helped loosen up and clear his secretions. Shirley had a two-hour cuddle and it was lovely to be able to talk and sing with him as he was awake for most of it. 7 hours later we just phoned his nurse who informed us that he is coping really well on a small amount of low-flow oxygen and that she may take him off oxygen support altogether during the night. Jasmine and Candace came in again after school, Candace read him the Good Night Sam story book again, while Jasmine watched a kids cartoon while peeking through the window at the tv of a patient next door.
Here's a video of Samuel just after he came off ventilation and had the remaining secretions sucked out his nose, something he hates and makes sure everyone knows it.
9
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Nicholls's
said...
It is such a joy to see this picture tonight and to hear of Samuel's improvement; he is very blessed to have two such caring and loving big sisters - enjoyed reading their blogs (you are all very adept at this now!). With our love and prayers Melvyn and Sally
So pleased to read Sam is doing better now, he sure is one tough little man! I follow your journey with so much hope for your family. Beautiful pictures, Sam is very gorgeous as are your two lovely daughters. I do hope the next few days see you out of icu and back in the wards. Lisa Robertson & family
WOOHOO guys. Awesome post tonight. Great to see big sister reading the story, Great to see photo of PROUD Mum watching, and Fantastic to see and hear Sam. Margo xxxx
Hey you guys. Still praying ... - thank you once again for doing such an awesome job of blogging. I laughed so hard about you using the colostomy bag as a bookmark Shirley and you trying to wipe the smirk off your face.. still laughing now actually - and i'm sure it was a couple of days ago. I remember feeling like that nursing... walking down the corridor with some ridiculously not that funny thing chuckling away to the air. Lots of love - Suga :)
I came across your blog and have been been reading your little man's story. Sam is obviously a very brave boy with a loving family supporting him & giving him strength. The reason I am writing is that my husband & I have had 2 children who were born with MMIHS. As far as we know - our babies Ashley & Kobe are the only children in NZ to be born with MMIHS - until Sam of course. Starship Hospital and wards 24B & 26B know us well - and Vipul was one of our surgeons at one stage. While I was reading your blogs - memories of our time in hospital with our babies came flooding back(not that they ever go away). Our angels are no longer with us - but if you ever feel like talking or want to ask questions about our experiences, please don't hesitate to let me know. My email addy is jax71@hotmail.com. Sam is in my thoughts & prayers.
How exciting for little Sam to have that yucky tube out, I can only imagine how uncomfortable that would be - no wonder he was a little horse, though it's thrilling to hear his little wee cry. He's so lucky to have two great big sisters and I know he must love hearing their voices and feeling their cuddles and kisses. Our prayers for little Sam are never lacking. Blessings to you all. Hilliers.
so lovely to hear sam's tube is out and even now maybe the nurse is getting him weaned off his oxygen all ready for even less tubes when he sees you in the morning. It is the first time i have managed with this link to download a vid, sooo lovely to see and hear him at last, maybe next time we can see him listening to his goodnight sam book! all our love, rose very excited about candace coming, merrw
It's great to hear of Sam's progress and wonderful to see his beautiful face without those tubes. We're still following your blog here in Seattle and still praying for Sam's health and the well-being for your whole family.
It sounds like you have some pretty special girls to put up with so much strangeness, first leaving Laos and now all this.
Francis, Shirley, Jasmine (8yrs) and Candace (6yrs) were living in Laos as a family when we discovered Shirley was pregnant with our first boy. However, the 20 week scan revealed problems with his bladder and kidneys which were grossly inflated with urine that wasn't draining through the urethra. Doctors at Auckland's Starship Hospital advised us to return to New Zealand where treatment could be provided for this congenital anomaly. We returned to NZ in March 2009, and Samuel James Davy was born on 6 June. He was diagnosed with MMIHS (see link below) - a very rare condition which means his intestine is under-developed and unable to absorb and process food as normal, while his bladder and kidneys are enlarged and poorly formed. So Samuel has been on intravenous nutrition known as TPN (see link) since birth, which runs for 18 hours per day through a central line and involves sterile procedures to connect/disconnect the feed. He has a stoma which empties waste into a colostomy bag, a hole in his uretos to drain urine from his left kidney, and a hole directly into his bladder to drain from the right kidney. Catheters are inserted into both drainage points every four hours to drain his urine. He also has a 'GJ' tube which runs through a hole in the stomach and down into the small intestine, through which he receives gradually increasing amounts of milk formula using a continuous feed pump. He also requires a continuous supply of a small amount of oxygen through nasal prongs. His liver is also affected but seems to be slowly improving, and the kidneys are currently functioning adequately despite their damaged state. Samuel spent 4.5 months in hospital from birth and underwent 9 operations to his heart, bowel, kidneys, bladder, and stomach before he was discharged and moved home on 28 October 2009. Our family have now relocated back to Auckland, New Zealand, Jasmine and Candace attend the local primary school, Francis has resigned from his job managing a rural development program in Laos, and both he and Shirley are currently caring full-time for Samuel at home, with close support from Starship hospital.
Prayer Requests
For his central line through which he receives intravenous nutrition to remain free of infection
For all the strength, wisdom and awareness that we will need in order to care for Samuel at home
Thanks for Samuel's gradual improvement to the point that he is able to be discharged and come home with us
For his new GJ tube to stay in place and for his small bowel to absorb some of the breast milk
For his lungs to grow stronger so he can come off oxygen support
For Samuel's kidneys to continue functioning well despite their damaged state
For Samuel's liver function to remain strong despite the risk of damage from the intravenous nutrition
For wisdom for the doctors to know how to treat his complex condition
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9 comments:
It is such a joy to see this picture tonight and to hear of Samuel's improvement; he is very blessed to have two such caring and loving big sisters - enjoyed reading their blogs (you are all very adept at this now!). With our love and prayers Melvyn and Sally
So pleased to read Sam is doing better now, he sure is one tough little man! I follow your journey with so much hope for your family. Beautiful pictures, Sam is very gorgeous as are your two lovely daughters. I do hope the next few days see you out of icu and back in the wards.
Lisa Robertson & family
WOOHOO guys. Awesome post tonight. Great to see big sister reading the story,
Great to see photo of PROUD Mum watching, and
Fantastic to see and hear Sam.
Margo xxxx
Hey you guys. Still praying ... - thank you once again for doing such an awesome job of blogging. I laughed so hard about you using the colostomy bag as a bookmark Shirley and you trying to wipe the smirk off your face.. still laughing now actually - and i'm sure it was a couple of days ago. I remember feeling like that nursing... walking down the corridor with some ridiculously not that funny thing chuckling away to the air.
Lots of love - Suga :)
Hi Shirley,
I came across your blog and have been been reading your little man's story. Sam is obviously a very brave boy with a loving family supporting him & giving him strength.
The reason I am writing is that my husband & I have had 2 children who were born with MMIHS. As far as we know - our babies Ashley & Kobe are the only children in NZ to be born with MMIHS - until Sam of course. Starship Hospital and wards 24B & 26B know us well - and Vipul was one of our surgeons at one stage.
While I was reading your blogs - memories of our time in hospital with our babies came flooding back(not that they ever go away).
Our angels are no longer with us - but if you ever feel like talking or want to ask questions about our experiences, please don't hesitate to let me know. My email addy is jax71@hotmail.com.
Sam is in my thoughts & prayers.
Kind regards,
Jacinta Ollard-Smith
How exciting for little Sam to have that yucky tube out, I can only imagine how uncomfortable that would be - no wonder he was a little horse, though it's thrilling to hear his little wee cry. He's so lucky to have two great big sisters and I know he must love hearing their voices and feeling their cuddles and kisses. Our prayers for little Sam are never lacking. Blessings to you all. Hilliers.
hello,
so lovely to hear sam's tube is out and even now maybe the nurse is getting him weaned off his oxygen all ready for even less tubes when he sees you in the morning. It is the first time i have managed with this link to download a vid, sooo lovely to see and hear him at last, maybe next time we can see him listening to his goodnight sam book! all our love, rose very excited about candace coming, merrw
It's great to hear of Sam's progress and wonderful to see his beautiful face without those tubes. We're still following your blog here in Seattle and still praying for Sam's health and the well-being for your whole family.
It sounds like you have some pretty special girls to put up with so much strangeness, first leaving Laos and now all this.
Stay well,
Merry
Lovely to hear his voice again.
lea
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