No Frills Blogs!

With Francis away (the technically gifted one) blogs will be void of video clips (I have NO idea!) and may just have randomly badly placed photos with text around it as it comes - so read on at your own risk of frustration.

After dropping Francis and the girls at the airport I returned to the hospital to find a very unhappy Samuel. He was clearly in agony with constant crying, arching his back and his heart rate was over 205. He was like this for atleast an hour and his left kidney had stopped draining all together with his left side obviously distended and hard to touch. Some morphine was prescribed for him while we waited for the surgeons to come as they were in theatre.

I am so relieved to report that the surgeons reinserted a long catheter (about 20 - 30 cm) into his ureterostomy and urine instantly started to drain. Within 30 mins about 150 mls had drained, his stomach was visibly shrinking before our eyes and for the first time all day Samuel opened his eyes and smiled! After they left I just flopped on the bed and felt a wave of relief sweep over me as I thanked God - I really was so tense and anxious but hadn't quite known it! So I'm pleased to say he had a really happy and settled night, which meant I had a really happy and settled night - oh hoorah!

Francis emailed from Bkk - safely in Bkk with dear friends and have already managed to devour sweet mango sticky rice - oh how unfair..... I think I'll go and have some more chocolate .....

Sa bai dee... Sa bai dee bor?

Greetings, are you well? (translation from Lao above). It's been a busy week - so Sam's blog is really a family affair - It's late Monday night and I'm at home putting finishing touches to the girls suitcases, as they prepare to return to Laos tomorrow with Francis and our friend Jae. The girls are really excited about heading 'home' and seeing their dear friends, dogs and familiar surroundings. They will be having some time in north Thailand with friends and also time at 'home' packing up their toys and helping Francis & Jae pack up the house. I've spent some time this week wracking my brain as to the contents of the house and writing out lists of what to ship back, what to sell and what to give away..... and I'm sure I've forgotten lots.

Sadly last Thursday a very dear and special family member died - Sir Howard Morrison. On Friday Francis and the girls went to Rotorua and were very privileged to be at his tangi (funeral). To be with the family as they remembered and grieved for this great man was an honour for Francis. They spent 3 days with the family but he needed to return last night in order to catch up with Samuel and me before packing and heading away tomorrow.

All of this coming and going passes by Samuel - he just lies in his bed happy and content as long as there is someone caring for him. The great people that have gone before him (of whom Sir Howard is one of them) as well as the wonderful friends we sadly leave behind in Laos mean nothing to him. Yet they are all relationships that have been apart of our journey to help shape the people we are now. I'm so glad the girls get to go back to say goodbye to Laos and their friends - it's so important. It's also important for Francis to tie up work things, although it is hard for him as he loves the people and his job very much. For me I'm trying to be positive, but really I'm sad as I would so love to be with my friends again - I'm too busy thinking through lists of what/who to have when/where... but I know that tomorrow night in the quiet of the hospital room, missing my family, I will allow myself to grieve for Laos, as this trip really finalises things for us. To have left so suddenly and now to make final plans to live in NZ is a challenge - we really experienced true community in Laos as we all lived and shared our joys and downers, our food and houses, our kids and life... it was so wonderful and I will never ever forget it.

Yet all these relationships are still there - just across continents.... and the change is all because of our darling little Samuel.

So on to Samuel - he's had an up and down week. He continues on antibiotics for his urine infection. The last couple of nights blood has been in his urine from his ureterostomy, and then today it seemed to slow/stop producing urine. This is/was a concern, but after adjusting his catheter it seems to have continued flowing again at the normal rate. There are a few ideas why there is blood - could just be localised trauma caused by inserting the catheter or it could be that the blood clot that was present months ago is dissolving.... or it could be due to an infection. There doesn't seem to be any conclusive way of checking, and as he doesn't have a temperature or be particularly distressed we are just going to watch him closely.

He is still being fed 2 mls an hour via a pump (that way it is at a constant pressure) directly into his jujunem (?). So far so good and they may increase that. He has gone off the bottle at the moment, but we still try it randomly through out the day. This is more so he has oral skills and experiences pleasure than actually any dietary benefit.

Last time Francis was away Samuel had his little, 'I don't want to breath anymore' episode which was just plain scary. Sams life is still so vulnerable and he can change so quickly and I am praying that we have a boring and non-eventful 11 days, if you get what I mean. When my mind starts going crazy I remind myself of the verse in Matthew 6 V 34, 'So don’t worry about tomorrow, for tomorrow will bring its own worries. Today’s trouble is enough for today'. It is lovely to have the wisdom of heaven practically making a difference to me in our little hospital room as it soaks into my little brain and helps me cope on a daily basis.

I'm much more hands on with Samuels care now - am changing his colostomy bag, doing his 4 hourly cares (emptying various 'ostomies') and have started learning the sterile technique so I can hook him up to his nutrition at home. It's quite intensive and I so want to get it right, as any infection is serious for Samuel, so the days in hospital are now very full and fly by.

I will try and update the blog daily whilst Francis is away, so he and the girls can be kept up-to-date. Francis will have a busy time in Laos sorting out many practical issues (packing up house, work issues, looking after girls), so he would appreciate your prayers for good health and ease/speed of tasks (that's no small thing in Laos!). We really want Samuel to have a settled time, getting stronger and fighting off this infection and protection for his kidneys which are always vulnerable when he has an infection.

We couldn't have gotten through this past week without Aunty Toria looking after the girls, sitting with Samuel, or just doing our dishes so we could get ready - thanks Tors, you've been amazing.... I look forward to devouring a very large block of chocolate with you in my hospital room one night when Francis is away!!!!

I've been trawling through our photos on the computer and wanted to insert some photos that hold special meaning to us. The photos with Sir Howard is very special to us, after a wonderful Morrison family reunion at Christmas time; our first bunch of bananas from the first tree we planted in Laos; and lastly villagers from southern Laos who inspire us with their tenacity and strong family units amidst daily hardship.

To our extended whanau as they prepare for the sadness of tomorrow, to our family and friends here in NZ and for our special friends in Asia that Francis & the girls will be hanging out with in the coming 11 days, our love and prayers go out to you.

Arohanui, Shirley

Blog by Samuel's cousins Joshua and Nathan

Samuel is looking really great, a lot better than the last time we saw him. We took him for a walk in his buggie, his third time out in the big wide world, but unfortunately it was too windy to stay outside. Hopefully when we come and take him out next time it will be nicer weather and we’ll be able to go through the park and have a lot of fun. Samuel wore dark sun glasses for the first time today and he looked like the coolest rockstar. All he needed was an electric guitar!

Everyone stopped in the hallway when they saw him and commented how cool he looked. We were surprised how good Samuel was when Auntie Shirley was suctioning out his wind. It didn’t look very comfortable. Pity he can’t do big burps like we do, even though Mum doesn’t like it.

Samuel had a great conversation with me (Nathan) talking baby language and making me laugh. He was awake a lot and loved me tickling his face.We all enjoyed having a cuddle with Samuel. He was very well behaved and didn’t cry. He didn’t dribble either and he didn’t poo!

We love you Samuel and we pray for you.

From his cousins, Nathan and Joshua Archibald (James was at his friends house).

Just what the doctor ordered

As you can see, we made it to the snow and as promised here are the photos of clear blue skies, although the snow was not quite the powdery stuff I had hoped for due to a lack of fresh snow for weeks now. But it didn't make any difference to the girls who still got to make their snowman with their friends Mila and Maya as well as learn to ski well enough in 2 days to ski down the beginner slopes and back up the T-Bar lift without any help from me. I was sorry that Shirley wasn't there to see our girls skiing for the first time, but I got lots of video so at least she could see how quickly they picked it up. It wasn't until I was going up the chairlift with the girls and swimming with them in the hot thermal pools in the evening that it hit me how claustrophobic life has become for us. For the past 3 months, our lives have mostly been spent within 10 square km's of Auckland hospital and we can count on one hand the number of times that the four of us have had the opportunity to spend time with friends outside the hospital. So I found it incredibly liberating just to get in the car and drive south for 4 hours on a road that was different to the 15 minute route between the house where we're staying and the hospital. And it was great for the girls to do something new and exciting rather than the regular Friday night TV dinner in Samuel's room.

Meanwhile, Shirley and Samuel were having a quiet weekend together up at the hospital, Samuel was settled which meant Shirley got some good night's sleeps and was able to focus on caring for Samuel and observing the nursing staff set up his TPN. Results came back from a swab of Samuel's vesicostomy that he has a bacterial infection, the same one he had while in Intensive Care called pseudomonas. Even though they knew he had an infection early this week, they didn't give him antibiotics straight away as he wasn't 'febrile' (showing a fever), however last night when I was staying up with him was when his temperature went up, heart rate and respiratory rate increased and he cried on and off through the night. So he's been started on antibiotics now which is targeting this specific bacteria. The other news this week is that his small intestine seems to be coping with the minimal forumla feeds that he's been getting direct into his intestine via the GJ tube that was successfully inserted last week. So today the amount was increased by 100% from 1ml per hour to 2mls per hour! That may not sound much (as it isn't) but it's a positive sign that his intestine may be capable of absorbing some nutrition which would reduce his dependency on TPN. The important thing is that the milk formula isn't being aspirated back out of his stomach which suggests that it isn't refluxing back into the stomach but hopefully is going the other direction and resulting in thicker and larger amounts of fluid in his ileostomy bag. I hope Shirley gets a better night's sleep tonight than I did last night, my turn is coming again tomorrow night, which is a good reason to sign off and make the most of my chance for uninterrupted sleep tonight.

Here's a video clip of Samuel charming his nurse

Good night

Francis

Slow and Steady

Well I am relieved to report that Samuel settled down after his procedure on Thursday. He needed paracetemol to get him over the pain of the poking and proding from the procedure, but was back to normal on Friday. 24 hours after the GJ tube was inserted they started him on paedialyte - a water/sugar/salt solution. Wait for it... at a whopping 1ml per hour. He coped with this well and then yesterday he was increased by 100% to 2mls per hour. Today he has just had the all clear to go up to 3ml per hour. They are happy he is coping with it and his ilieostomy bag is producing slightly more, with some more solid'ish bits in it. Tomorrow, all going well, they will introduce this part of his gut to milk - but taking it back to 1ml an hour.

We're also pleased that his vesicostomy site hasn't gotten any worse. It still is slightly 'sloughy' but better than it was. Sam's vital signs are all good, so they are confident that he doesn't have an infection.

Francis texted to say the girls are loving being in the snow and they were successfully skiing down the beginners slope unaided - I can't wait to see the video.

So just wanted to let everyone know after Thursday's blog that Samuel is doing well.

Must dash back to his room. X Shirley

An Important Date in the Calender

After 4 nights in a row at the hospital it feels strange to be home and without my boy in the same room with me. When Shirley and I were alternating nights up at the hospital, Samuel always managed to choose the nights I was in the room to cry his way through the night, so I was unsure what state I'd be in after 4 nights with him. But I'm pleased to report that he went easy on his old man and slept solidly, with the exception of the odd grizzle around 4am. There's a curtain between the bed and Samuel, which is pulled across when I'm asleep, as the nurses have to come in during the night for their hourly pump checks and bag changes. Fortunately, they use a torch so as not to wake the parent and as Samuel's room is opposite the nursing station, usually they'll hear Samuel if he's crying or his oxygen levels are dropping and come in to settle him before I am conscious enough to figure out what's going on.

Today we had our second training on TPN (feeding Samuel intravenously), which focused on what precautions we need to take when taking Samuel off TPN for 3 hours break (hooking off) and then setting up Samuel's new bag of 'food' every evening (hooking on), in order to prevent infection through the lines that are inserted into Samuel's bloodstream to deliver the nutritional fluids. However, as I will be heading back to Laos in 2 weeks time, Shirley will be trained on how to set up his TPN while I'm away, and then my training will start when I return from Laos, and once I am as proficient as Shirley will be by then, we'll be able to take him home! Our trainer has put a tentative date in the calendar of October 19 as a target date to work towards Samuel's discharge - it's quite incredible to think that we could all be home together in one month's time! However, as our trainer explained, Samuel is likely to be a 'Frequent Flier' when it comes to visits back to Starship, given the many holes in his body and the added risk of infection. But we're still very encouraged to have a date to work towards, even though there's a lot still for us to learn and considerable set-up to be done at home to get his room equipped with oxygen compressor, trays full of syringes, gauzes, lines, connections, saline etc., a metal trolley, stand for the TPN, fridge....

We had a small step forward today when the radiologist was able to insert the GJ tube through Samuel's gastric hole in his tummy and down into his small bowel. You may recall that the first attempt last week was unsuccessful as the pipe was too wide to bend around the abnormally sharp turns in Samuel's intestine. So we were pleased that the new technique worked in getting the pipe in the right position to bypass the stomach and give feeds directly into the small bowel in the hope it will be able to aborb some nutrients and reduce his dependency on TPN. Unfortunately the only tube they could use didn't have any means to secure it from coming out so the Radiologist isn't sure how long it will last as the only thing preventing it from pulling out is some tape across the tube on his tummy. This time Samuel was a lot more upset by the procedure and cried non-stop for the whole hour, obviously in discomfort from the poking and prodding of the line as it went through his stomach and into his small bowel. That was early afternoon and by the time I left early this evening he was beginning to show a temperature, his heart rate was elevated, he was breathing faster, and he looked more listless then normal. We're hoping it isn't another infection, but his vesicostomy site has some pus coming out from it so that may well be the cause, or it could just be a reaction to the procedure this afternoon. They're keeping a close eye on him and will start him on antibiotics again in the next few days if his condition deterioriates, but we'd appreciate your prayers for protection against further infection.

Being based up at the hospital, I was able to get a lot of work done on my final Masters project this week, so I don't feel guilty putting the laptop away for the weekend and taking my girls skiing for the weekend. We leave tomorrow lunchtime (taking the girls out of school early) and will be spending the weekend with a South African family we've got to know through school whose daughter is in the same class as Jasmine. For me, teaching my girls to ski is a dream come true ever since Shirley and I spent 4 full seasons skiing in Europe when we were in our mid-20s. However, the actual experience may differ somewhat to the idealistic picture that I've carried in my mind, especially if the snow is mushy after the warm weather and the girls are more interested in snowball fights and hot chocolate in the lodge. But it will still be fun to have our first trip out of Auckland since Easter when we were down in Rotorua, and there's always the geothermal hot pools in town and log fire in our friend's holiday home if we get too cold and wet.

We'll be back on the blog early next week with photos of beautiful blue skies and pristine powdery snow.....

Francis

Observations from the outside.

This is an Aunty blog. I'm Marion, and have been able to grab 4 days in Auckland catching up with the family.Finally getting to meet Samuel is wonderful. It has been fascinating (and frightening sometimes) reading Samuels blog but really hard to grasp some of the challenges of this wee fellows life. Being here, and seeing some of his daily routines has been interesting. Ordinary daily activities need alot more thought and planning than most people will ever realise.

Today we went to the Domain gardens for some fresh air and spring sunshine. A very simple outing that involves quite a bit more than just "quick into the pram and off we go." Some lines that need connected to portable equipment, check batteries, have a look at the clock - Samuel needs to have these cares now, and be back for the next ones when? Finally all ready and off we go! Wonderful to be outside and enjoying the time. There is an amazing knarly old split Pohutakawa tree that is a natural slide, worn completely smooth by hundreds of childrens bottoms! Ducks and ducklings to watch and chase. (Geese to keep away from!) An opportunity for some family photos and family play time.

I have really enjoyed the chance to babysit my nephew. Coming from the bottom of the south Island means I won't be able to do this very much at all. He's a hard wee chap to get smiles out of, but we had some great chats while he was awake. Samuel has had some really settled days and nights which is great -good resting and growing times for him, following some really rugged weeks earlier on. I sat with him for a few hours yesterday and hopefully will get the chance tomorrow. Lovely to spend time with the girls as well - walking kids to school was quite a novelty!

It was a real lesson in patience and timing, and the answers to alot of prayers that I would be able to come and stay, and be able to help in some way. I feel very blessed to meet Samuel.

A new week

Samuel had a happy day - content when awake and lots of smiles. He's starting to try to giggle which is hilarious, as he kind of snorts. We will try and capture it on video next time.

Yesterday we had a 'watcher' from the hospital watch Samuel for the afternoon so that Francis & I could spend the afternoon with the girls. It was great to be the four of us and we headed to the cinema to see 'Up'. In the weekends sometimes the hospital can arrange 'watchers', who are health care assistants, to be with patients to give families some respite. During the week there is a team of volunteer 'grandparents' who fulfil the same function, so we may try and make more use of this facility so that Francis & I can get some time together.

Today my sister Marion arrived for a 4 day visit, and she was lucky to get some cuddles and smiles from Samuel, which was lovely. So Francis is staying with Samuel for next 4 nights, so I get time with Marion and he can have nights to work on his final masters assignment - at hospital there are no other distractions, but at home there is always something else to do. So it works well for both of us!

The week ahead holds TPN training for us on Wed, Thurs and Friday. We will hopefully know more about ongoing options available to Samuel regarding trying to put in a GJ tube and they may try again with the use of a scope... or possibly try a joint radiologist/surgical implantation.... but we will wait to hear. Otherwise it is just more of the same - trying to get on top of his UTI with antibiotics and learning how to care for him.

Best wishes to all, X Shirl

Yo-Yo Land

We are sorry to say that after the elation of Sunday we are feeling a bit 'flat' and down as it has been a disappointing week.

On Monday Sams breathing started to be very eratic again and his O2 levels needing increasing. He was scheduled to have an iron infusion over 6 hours, but if this hadn't been happening we still couldn't have taken him out of the hospital again as he didn't seem stable. So Monday he got an iron boost.

Tuesday his urine tests came back with very high white blood counts - a sign that his body was gearing up to fight an infection.... so more urine was sent to be cultured and although he didn't have a temperature his breathing rate and his O2 requirements rose.

Wednesday his planned trip to radiography happened, but he returned to the ward 30 minutes later exactly as he had left, as there wasn't a radiographer to perform the procedure. He was started on anti-biotics as, if he has a urinary tract infection (UTI), they want to err on the side of caution. Also on Wednesday his O2 requirements went really high, but after suctioning a bunch of goo out of him, he settled back down.

Today instead of TPN training we took him back to radiology to have his new tube inserted into his stomach. The 'G' tube goes into his stomach, but his stomach isn't working, so they wanted to insert a 'GJ' tube, which is a tube that goes through the stomach and duodenum and ending up in the Jujenum (which is the top of the bowel). Unfortunately after an hour of trying and using 2 different tubes and contrast dyes under live x-ray the radiographer admitted defeat. Samuels internals are very badly formed and the sharpness of curves in his gut plus their strange formation (floppy) meant it was impossible to do the procedure. So we're really disappointed for Sam - we were holding out hope that maybe it would be possible that part of his gut could work and digest normal, albeit tiny amounts of, food.

Tomorrow the radiologist will chat with the surgical team to see if there is any way the 'GJ' could be inserted - we hope so, but I dread the thought of more surgery for him.

So we are a bit down, especially after such a lovely day on Sunday where it gave us a taste of being a family. 2 weeks ago at church we sang a song that just hit home to me.... the lyrics sum up my state of mind..... often up, often down... yet in the midst of this yo-yo'ing of emotions the truth of an unchanging and loving God keeps us secure - it's not meant to sound cheesy, it's just a tangible reality for us right now, when everything is out of our control. No amount of our money, personality, planning or skills can do a single thing to help Sam..... we just have to walk through each day admitting our lacking and asking God to give us and Sam what is needed.

We've always clung on to the fact some part of his gut may work... but as the options run out, it's getting harder. Sam is so engaging now it's just lovely.... but painful too.

Anyway, the lyrics ... and then I'll pop in some photos of him today. He looks slightly 'tortured' during radiography but he nearly slept through the whole thing, even with his arms tied up under his head!!! Francis and I were in with him talking to him and he had music.... so he was actually pretty chilled, which we were thankful for.

Even in a world, where nothing stays the same, there is still a truth, a truth that still remains.

Even though the heart, always seems to change, there is still a love, a love that stays the same.

Forever you will always be, Our God on high, the Lord in me, The king of hope, the Lord of love, the Prince of Peace, the Lamb of God.

Sleep well. X Shirley

Fathers Day!

Well WHAT A DAY!!! Daily between 3 & 6pm Samuel loses most of his lines, so we checked with the consultant who said we could go for a walk at this time but with 2 conditions - 1. We have lots of fun and 2. We take lots of photos for the blog.... so being the obedient patients that we are, we obliged the lovely Dr Evans!

Francis took the girls to lunch with his Dad to celebrate Fathers Day, whilst I learnt how to get Samuel mobile with an oxygen cylinder and heart/lung monitor. So at 4pm I bundled him in the hospital buggy, O2 cylinder in the bottom and mobile monitor on the top..... and went downstairs to meet the girls and Francis. The girls were so excited to be out with him and were keen to push the buggy, although it is a little heavy to stear for the girls with the O2 cylinder. We wandered over to the Domain, which is spectacular in spring, with blossoms abounding, little ducklings waddling behind Mother duck and sun shining - a perfect day for Samuel's first adventure into the outdoors! He stayed awake for most of it just gazing up and around and was a lovely way to celebrate Fathers Day and Samuel's 3 month 'birthday'. The girls enjoyed climbing in the trees, feeding the ducks and being out as a 5-some. Francis looked proud as punch to be out with his son and it was a really memorable afternoon.

We got Samuel back by 6, just in time for his weekly bloods to be taken and his dinner to be hooked up to his foot again....... but I have to admit it was so tempting to just hi-tail it home, but you'll be relieved to know that common-sense overpowered my impulse! This week we start our theory training for TPN on Thursday and Samuel has an iron infusion and some more gastro challenges ahead.... so we will just have to make the most of the 3 hours each afternoon to get out and about.

I will leave you with a bunch of photos which I hope convey the elation of this milestone for us today.

Best wishes, Shirley

p.s. mental note 1. Wash necklace tonight

mental note 2. Don't wear long dangly necklace tomorrow when emptying urine bag!

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 Training Begins

Tomorrow marks the beginning of our training as we prepare to learn how to manage Samuel's care once he is able to be discharged and come home. The surgical team came around today and Samuel's surgeon recommended that the catheter draining from Samuel's left kidney and into a catheter bag be taken out tomorrow morning after another ultrasound scan to check the condition of the kidney. We will then be taught how to re-insert the cathether tube up the left ureter and into the kidney which we will need to do 3 times per day to drain the urine. It sounds daunting, but apparently it's not so scary once we get the hang of it. The next step will be to remove the cathether tube draining from Samuel's vesicostomy and then for us to learn to re-insert that catheter 3 times per day to drain the urine from the right kidney. Once Samuel doesn't have catheter bags attached to him all day, which could be as soon as next week, we'll be able to get him out for a short trip to the world outside in his buggy with an oxygen bottle underneath. It will be an exciting day when we can all do something 'normal' together such as feeding the ducks in the park next door.

Once we've learned how to manage Samuel's catheters, it will be time to learn how to give his nutrition intravenously (TPN) at home. There are about 10 families in New Zealand with children living on TPN, so although it will be steep learning curve initially, we know others have managed to get the hang of it with close support from the hospital and the TPN supplier.

To give us something to look forward to, we've booked a week's holiday this summer at a holiday home at a nearby beach north of Auckland kindly made available to families such as ours by the Immune Deficiencies Foundation of New Zealand IDFNZ www.idfnz.org.nz . The thought of having Samuel at the beach and outside of Auckland is beyond our ability to imagine right now but we have the faith to believe that by January 2010 it won't seem such a big deal.

Good night all

Francis