Friday, September 4, 2009

Mum's the word!

Not only am I known as 'Mum' to Jasmine, Candace and Samuel, I'm also called 'Mum' by a sea of Doctors, Nurses, surgeons, physios, occupational therapists, hospital chaplain, cleaners, social worker and anyone else that rocks into Samuel's room - I don't blame them, they have hundreds of patients and family members so learning names is just not going to happen...Well this week I was in the school office filling out paperwork for Jasmine's swimming lessons and I noticed a boy wander in and the receptionist asked him, 'Where's Mum?' to which I answered without hesitation or thinking, 'Yes, I'm here'.... then I broke into full consciousness, saw a confused/frightened 8 year old boy shaking his head slowly at me and the receptionist frowning.... so I mumbled, 'oh sorry, my mistake', finished what I was doing and left rather red faced!

It has been a good week for Samuel and a few days since we've written, as we've been focusing on time with the girls (they've been unsettled and tired) and Francis has another paper due for his masters next week.... so the blog was what lost out.

Samuel had his tube in his ureterostomy removed so now he has a hole in his left side - it's kind of looks like a small 'innie' belly button at the same height as his belly button but directly up from his hip. The surgeon and his nurse specialist came and trained Francis and myself how to clean the site and insert a tube to release the urine from his kidney. It's a simple task and we need to do that every 3 hours or we can leave a catheter bag on over night.

The next to go was his vesicostomy bag - the vesicostomy site (directly into his bladder) was the one that had to be operated on 3 times as it prolasped twice and then finally they stitched up the old one and created another one slightly higher. It was also this site that was badly infected when he was in ICU. But it's healed beautifully, the stitches are out and now his urine leaks from this site straight into his nappy. We also insert a tube into this site to ensure the site stays open and to ensure any excess fluid, which may be pooling, gets out.

So Samuel actually has 2 completely seperate urine systems. His right kidney drains internally into his bladder and out the vesicostomy into his nappy and the left kidney drains into his uretor and we put a tube directly into that to release the urine into a tub for weighing and disposal. At this stage each is carefully weighed as we monitor his kidney function. Earlier this week Samuel had another ultrasound of his kidneys and the surgeon reported today that they are in better condition than his last ultrasound in August - so that's good news.

His 'G' tube - stomach tube has about a 10 cm tube hanging down from his stomach which can be attached to a large bag to collect contents... but mostly we close the tube as his stomach isn't producing much and we just open it periodically to asperate, which also makes handling him easier without a bag hanging around. This tube has a 3 way attachment at the end - 1 for asperating, 1 for putting medicines in and 1 for putting water in to inflate the balloont that holds it in place.

Unfortunately the 'milk experiment' hasn't been that great - sometimes he drinks well, other times won't touch the bottle and it seems that most of the milk just sits in his stomach and he doesn't have the muscle activity to push it down through his system, so that is disappointing.

Also on Wednesday his constant morphine infusion was weaned and stopped so that line was removed from his arm.... so now it is just so easy to pick him up! All he has is a monitor around his foot (heart + O2 reading) and his TPN (nutrition line) into his other foot. They have reduced his TPN to be given over 21 hours - so for 3 hours between 3 & 6 pm this line is also removed. So this week has been filled with lots of time holding him and interacting.

Samuels blood results this week have shown he is anaemic so early next week he will have an iron infusion which takes about 8 hours. The day after this is done they hope to get him down to radiology as they want to put in a 'GJ' tube. My understanding on this (read 'I might have not understood it all!) is that as his stomach isn't pushing the food down to his dueodenum/bowel, they are going to feed a titanium tipped feeding tube in via his gastro-tube into the top of his dueodenum to see if this part of him works. They do this under live x-ray to ensure it is placed accurately - we/they are really desperate to get him to take even a little food to protect his liver. He is still jaundiced with a reading over 120 (should be in single figures I think) but one good thing is that it is constant and hasn't been climbing.

Samuel still requires O2 and we tried weaning him off, but he would not cope well and it would have to be put back on or increased. So we are really hoping and praying that his lungs will continue to develop and become strong.

Anyway I will leave you with some photos of Samuel smiling, the girls having 'family tv hospital dinner' and the view from our room - I always used to watch rescue helicopters with amazement and excitement - now I view them with amazement and dread as I know that somewhere a family has a crises on their hands each time they arrive.

This weekend will see Jasmine horse riding at a friends birthday party tomorrow and Sunday is 'Fathers Day' in NZ so Francis will take the girls to celebrate with his Dad and Mum/family whilst I hang with Sam.

Will write again on Monday and wishing you refreshing weekends and special time with your loved ones wherever you are.
Arohanui, Shirley


The Heslop Family said...

Wow, what a week! Shirley, you write an amazing blog. Thank you for sharing it all with us. We continue to pray for you all - and hope you have a great weekend. Happy Fathers Day for Sunday, Francis! xxoo

Anonymous said...

Please send me your e-mail address - our little girl has MMIHS and has been though a lot of what your little boy has - she is now nearly 3 and if you would like me to tell you our story in a nutshell then i would be more than happy too! Our e-mail address is - Abbie, our little girl was/is being looked after at the Newcastle RVI in the UK.

Anonymous said...

I'm sure if all the mums out there are honest, you'll find we have all answered embarrassingly to the title. I answered the phone once "mum speaking" giving the truckie on the other end his laugh for the day. The kids just roared!
Glad to hear that Samuel is being unleashed(so to speak). Long may it last. Blessings and prayers to you all. Have a happy day with the girls Francis.
Marion and the cousins.

Pygmy said...

I eagerly check Samuel's progress morning and night! All the technology in is wee body amazes me. I have shared Samuel's story with my class of year 4/5 children. We are studying heroes, and our local rescue Helicopter pilot and doctors featured highest on the list. (No utterings of Superman, which was a relief!) The children are discovering what the word 'empathy' looks like within the context of heroes... Samuel has been a wonderful catalyst for rich dicussion about how the medical profession press in to discover wonderful ways to make people as healthy and comfortable as can be...They are 'true and unselfish heroes' as one of the girls in my class said. You will never grasp how deep and wide God will use Samuel's story to add richly to other's lives. Thank you. Instead of maths in the morning, they want to know how baby Samuel is! Works for me! ;)

Kia kaha e hoa,

oleyfriends said...

I found your blog and wondered if you had heard of the Oley Foundation.

We offer free information and peer support for families with a member on home tube or IV feeding. Check out our website at

In particular I wanted to tell you about a treatment for infants/children on TPN who have liver disease -- it's called Omegaven, and it's an alternative IV lipid source for kid's TPN. Follow the link below to read more about it. Of course getting to tube feeding would be best.

• Omegaven -- a new treatment for liver disease in children on TPN

You might also be interested in meeting other parents who have been there, done that. You can try these links below -- or feel free to contact me and I can make a more personal match.

• Meet Patients Section (try all three links)

• Tube Feeding Tips page

Finally – a great resource for home TPN and tube feeding.

• TPN Complication Chart

• Tube Feeding Complication Chart

If you have any questions or would like to be introduced to another family, feel free to contact me. Also -- If you want more information on the various kinds of tubes available, the pros and cons of a GJ-tube, contact me.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
(800) 776-OLEY

oleyfriends said...

I forgot to mention. We have a new volunteer in New Zealand. In case it's helpful here's the contact information.

Brenda Dunn, HPN
State Highway 29
Natamata New Zealand
(647) 888-2955