A Baby and a bottle

On Friday a SLT (Speech Language Therapist) visited Samuel and, in consultation with the Dietitician and lung doctor, wanted to watch Samuel drinking milk - sounds simple enough, except at 12 weeks he never had yet! They wanted to start him on 5mls of expressed breast milk. I asked her if they planned to give it to him directly into his gastro-tube, put it in via a nasal-gastric tube through his nose or syringe it into his mouth. She looked at me as if I was a bit strange and said, 'um, a baby's bottle should be fine'! I stared at her for a bit and then the penny dropped, 'Oh... you mean feed him...with a bottle?!'. It was so weird after 3 months of very little normal baby stuff, sitting holding Samuel and putting a bottle in his mouth - and he loved it, latched on straight away and drank it perfectly - well it was only 5 mls, but still - I was so proud of the wee guy! She was confident that it had not gone down into his lungs (one of the concerns surrounding his episode when he stopped breathing) and he was visibly pleased to have something in his mouth that wasn't inflicting pain and tasted good... and I'm sure he would have drunk a whole bottle if he'd had his way - the look of delight in his eyes was precious. But for now we are feeding him 6mls of milk every 4 hours and monitoring how much fluid comes out his gastro-bag (direct from stomach) and how much comes out his colostomy bag (his bowel). The best result would be if more comes out his colostomy as it would mean he has some muscles pushing it the right way. If Sam can cope with real food, albeit a small amount, it would help protect his liver a little from damage, which is caused from constant TPN use.

Last night they stopped his oxygen support for about 10 hours, but he wasn't coping as well as he needed again this morning, so he's back on low-flow again.... so we are learning to be patient (well I'm not, but trying to!) and realise it is all a very slow process. Lungs continue to grow and develop as opposed to deterioriate, so they aren't overly worried about his O2 requirements.

I slept at hospital last night, and Sam had a pretty settled night and it's Francis' turn tonight. The ward were given a bunch of complimentary tickets to ballet at the Aotea Centre today. Having never been to a ballet before, I took the opportunity and took the girls. The orchestra was amazing and the ballet was overall great - read between the lines what you will.... But about 10 mins into it a wee voice pipes up beside me (just as the musics lulls).... '('sigh)... when is it going to finish?' Thankfully it picked up after that and the girls were amazed by the stage sets, that there were lots of male dancers, costumes, disappearing fairies etc etc... but weren't too thrilled when the 2 main characters died at the end. But it was a superb afternoon and a really special treat for us and Francis had some boy time and lots of smiles with his son.

After the ballet we had a family tv dinner, the 4 of us cuddled up on the single bed watching 'Happy Feet' on tv and Samuel sleeping beside us in his cot.... simple but wonderful to be together.

Sleep well. X

Ramblings from 'No-mans land'

Today it was disappointing to see Samuel with his nasal prongs back on his lovely face, as he had been struggling with his breathing over night - I was so sad I burst in to tears when I saw him. We had had such a lovely day before and he was doing so well.... then wham, something else hits the boat and rocks us. He'd had a grumpy night which was due to a lure in his hand tissuing (breaking down) so the fluids were going straight into his arm... as soon as the pump was stopped he calmed down. So at about 5am an on-call Dr came and removed that lure and put in a new line in his left foot. He was a lot happier after this. Today they sent off more urine samples to check if the bacteria was still present from his earlier infections, as they are wanting to stop one of his antibiotics if they can. They are concerned at line access for him, as he only has as a limited number of veins they can access and with each one that tissues, he has one less available, so the Gastro-team were going to talk to the surgical team to see if they could have a more permanent IV line put in. The downside of this is it is more plastic in him which is at risk of being infected, but running out of veins is also not a good scenario.

Today we had a nurse from the Kids Foundation visit. It's a charity that supports families with kids with liver and immunedeficiency syndromes. We were given a registration form a couple of weeks ago to fill out for her... but I put it in my bag not wanting to complete it, as I thought if I send it in I'm actually admitting that we are now amongst a group of people needing support and information as our kids is seriously sick.... and I hated admitting it. At times I've heard people talk about Ward 26B being for really sick kids.... and I realised today that I've almost thought of Samuel as if he was an exception and was not in the same category. I know it sounds completely thick that I wouldn't be aware of how ill he is.... but I think I've know it in my head but my heart hasn't caught up and there hasn't been time or space to grieve it.

I know in my head that he is so unwell, yet in my heart he is so alive... and now he is smiling and responding he is even more alive. I've been pondering where hope tips over to denial... and I don't know where the boundary is...... and I find it hard to get the consistency of thoughts of reality (he is very ill) balanced with hope and faith and dreaming and praying for things that we can not see now.....

This week we have known such encouragement as we've had friends drop meals in, a mystery delivery of groceries arrive on our front porch, cards in the post (thanks T - you're a star!), friends popped in with inspiring books for reading etc. So we continue to be humbled by the love of so many.... and that we're on your radar, when we know life is busy and has challenges for everyone. Words will never be adequate to express how much it has touched us.....

The writer below sums up a lot of my thoughts and frustrations much more eloquently than I could, so it's just easier to put it in. I leave you with this poem as I am coming to grips with the fact that we are in Holland and not Italy - I think at the moment I'm in 'No-man's land'. I know in my head 'Holland' has great beauty and I've already seen it in the people we've met, the lessons we've learnt and the love we've known in so many different forms from friends and family, but to truly admit we didn't make Italy I fear the sadness and disappointments may consume me.... and right now I need my energy for getting through each day with normal life things and abnormal life things...

Oh - and to all our wonderful Dutch friends (Adrienne, Jop & Vonn, Elco & Nicolette, Pieter-Jan & Berlinde, Sue Davy etc, etc etc...) NO OFFENSE intended - I didn't write it!

"Welcome to Holland"

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going toItaly."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Smiles & Sleep!

Last night I stayed up with Samuel and much to Francis' despair (after his sleepless night), Samuel slept soundly as did I.... or I was so tired I just slept through it! After a day where he was twitchy and restless he settled down. The Doctors from the 'Pain Team' popped in again and had prescribed him medicine to help him with his morphine withdrawal symptoms... but it seems sometime in the afternoon he adjusted to the dose he was on. They think the morphine had been reduced too rapidly, hence the reactions, but that he has now adjusted. They will be in again on Friday to talk about reducing it slightly. As his kidneys are damaged his metabolism is very slow, so they are looking at taking another week or 2 to wean him off slowly.

The Gastro team had called in the Respiratory Docs for their opinion on Sam's respiratory responses before going ahead with some new experiments in feeding for Sam. They are concerned that there is no clear reason why Sam stopped breathing 2.5 weeks ago and wanted him to be fully checked out, as one reason may be that he was asperating fluids into his lungs. So Samuel's heart and breathing rates were recorded for 10 hours last night. This morning a detailed report, plus blood results,were reviewed by a Dr from this new team. Although his stats are slightly lower than on a 'normal' child, they are considered 'adequate for him' and they aren't duly concerned with his lungs. It could just be that due to huge pressure on his diaphram due to his stomach/kidney issues since in-utero, that his lungs are still slightly under-developed. The Dr is going to do some further research (ie, are lung issues normally associated MMIHS etc?) and will get back to the gastro-team shortly with his findings.

Meanwhile Sam's 2 wounds are healing beautifully and otherwise had an uneventful day, full of cuddles and smiles!

Ward 26B

Today Samuel left ICU and moved back to his old room - right opposite the nurses station on Ward 26B - Medical Specialities. There is a bed and a cot in the room, so Francis and I will alternate having nights with Sam and a night with the girls. Sam continued to be settled today and when he is awake he is smiling and looking around. After school the girls each had time holding him this afternoon - the first time his face has ever been tube free with them.

Tuesday is the big ward round for the week (they have daily rounds, but Tues is a super-duper one apparently!) so Samuel will have had a night to settle in and then the Gastro team will be able to start some other treatments with him, which were halted 16 days ago when Sam was raced to ICU. All his surgery is now hopefully over, and the surgical team will be in discussion with the gastro team about when/how various drains are to be removed or changed. Both his wounds that were infected are healing really well.

One of us had been sleeping on level 3 in rooms designated for PICU parents, so Francis moved out his stuff and we are now settled into the 6th floor. We have been in hospital for 11 weeks now and the novelty of constantly packing and repacking overnight bags has lost it's novelty! Our car is kind of a travelling wardrobe of sorts and it seems my mind is constantly thinking through practical plans for the next 48 hours and comings and goings. We asked the gastro nurse specialist for a vague idea of how long we may be in hospital (ie, time to take to teach Francis & myself how to care for Samuel at home/teach us how to change his daily individualised nutrition etc...) and they gave us roughly another 2 - 3 months as a guideline. But we really don't know as Sam has shown us that any day can change dramatically..... it's just me trying to gain back a little control - one day I'll learn that 'control' is all an illusion!

But for now we're so enjoying being able to pick Sam up when he cries and rocking him back and forth and seeing his face light up - it's just worth it all!

Much love. S

From Mouths of Babes

I wanted to put some quotes up from the girls which brought smiles to our faces and insight into their world as they inhabit 'planet hospital' with us.

The girls know that many different parts of Samuel's internal workings don't work properly. Today Candace was looking at his chubby cheeks and many chins, and not spotting an obvious neck said, 'Did Samuel's neck not grow either?'.

When we told the girls that we'd pop back in to see Sam this afternoon Jasmine hesitated and said, 'Um... Mum... it's not ACTUALLY that interesting staring at a sleeping baby'. Francis & I hang out with Samuel most of the day and we get to see him when he is awake, being washed, crying and asleep. But mostly when the girls pop in he's just asleep... and Jasmine's right - not that exciting for them!

I was asking the girls what they thought when they see other sick kids on the wards, many in wheelchairs, with various drips/tubes/bandages etc. Jasmine said she felt scared. I asked her what she was scared of and she said she was scared she'd catch what they had. We have been so strict on them handwashing etc, and the hospital is plastered with signs about Swine Flu and the risk of passing on germs. They made a natural link from what they've been hearing to what they saw, but we were completely unaware of it!. We had a good chat about it and now when we see someone I ask the girls questions like, 'what do you think her favourite t.v. programme could be?', 'Do you think that kid would like vanilla or choc ice-cream best?', 'I bet he's good on the monkey bars - do you think he'd be better than you?'. It has been good to help the girls see the kids are just like them and not to be afraid.

Sleep well. X Shirley

Going Cold Turkey

We thought Samuel would be back up in the ward by now, but we discovered yesterday that the ward was short of staff and that Samuel may remain in intensive care until Monday. Actually we're glad he didn't leave ICU yesterday because last night he started exhibiting what could be withdrawal symptoms after the morphine was switched off on Friday morning, after 2 weeks of constant infusion following his most recent surgery. I was in with him for the evening and after a relatively relaxed day he started getting very agitated from about 9pm and couldn't be calmed. His heart-rate was climbing to 200+ and his oxygen levels were dropping, so after trying everything else the doctors agreed to a few one-off doses of morphine to see him through the night. That seemed to be what he was needing and both of us slept from about 1am through to 7am, when I learned that the nurse had put him back on low-flow oxygen as his levels had dipped a little, and that he had a high temperature and his white blood cell count had also increased, all sign of a possible new infection. So that was disappointing news after spending the last 2 weeks fighting the infection in his wounds, which are now looking much better. The doctors have taken urine and blood cultures so we're waiting to see if whether anything grows in these cultures in the next few days to confirm whether or not he has a new infection.

This morning, the doctors discussed Samuel's morphine requirements and agreed to restart him on a morphine infusion and then to wean him off gradually over 5 days so that his body doesn't

have the same reaction as last night. It's understandable he's grown attached to his morphine, as due to the multiple operations he's been on a constant infusion for most of his 11 weeks of life, so we're glad he's going to have time to get used to smaller doses before it stops completely.

You'll see from the main photo that we're finally getting the chance to enjoy our son without any tubes at all covering his face. I'm not convinced that's a smile, I think it was just lucky timing! He hasn't had much to smile about lately, but we're hoping that will change soon as he recovers fully from this infection and enjoys being off the ventilator and breathing for himself without the need for getting mucousy secretions suctioned up through his nose every hour.

Tonight, my brother Eddie and I took Jasmine and Candace out to a 'Knights and Princesses' Ball run by one of the local churches. The girls were so excited and spent most of the day shopping for their accessories and getting all made up by mum. It was a really fun few hours to enjoy with the girls, just dads/uncles and daughters/nieces all dressed up dancing late into the early evening to an eclectic mix of Hannah Montana, 'Funky Town', 'Mamma Mia' and 'We are Family', followed by cakes and softdrinks for dinner.

Tube-free again

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.

Wednesday Night

This afternoon at 4.30 Samuel was wheeled back into theatre for a 'procedure' - not surgery. This time it was with the ENT (Ear, Nose, Throat) team so they could put a camera down his airway to check out his larynx and bronchial tubes to see why it was so swollen. It was potentially one of three things: 1 just general swelling due to irritation caused by multiple and long term ventilation tube, 2 an anatomical problem or 3 irritation caused by acid reflux (stomach issue). THANKFULLY it was number 1! We are really pleased, as we are a bit worn out from horrible surprises and option 2 & 3 are more serious than option 1. So the outcome is that they will give him a steroid dose at midnight tonight to help reduce the swelling as they would like to extubate him tomorrow morning, then watch him over the day to see how he copes.

The downside of steroids is that it can reduce his ability to fight infection... and he still has infections in 2 of his wounds, so it's not ideal, but they have to also deal to his discomfort of the tube and potential damage to the airway.

This evening I had a lovely evening with my special friend and some delicious Baileys Cheesecake (!) and then went back and just sat and watched Sam for about 45 minutes. It was just a special time watching him - I love watching him sleeping and wondering what he's dreaming of as his face grimaces, chin(s!) trembles and eyes scrunch... was just lovely to watch and smell him - don't babies also smell delicious?! A light went on in my head tonight as I gazed at Samuel, that I just see him as 'Sam' - our wee boy, not defined by his problems... the times I see him as 'Sam with lots of bags and holes' I feel overwhelmed and lose sight of him just as Sam. I wonder how often I have seen people with physical problems and diminished them by not seeing them as 'John' or 'Mary', but felt pity for them as 'John in the wheelchair', or 'Mary with Cystic Fibrosis'. We're surrounded all day by the sickest children in NZ, with rare and difficult conditions and physical limitations, yet I see them hanging out and laughing and hassling the nurses and whining for ice-cream - they're just normal kids with more challenges than most.... but I know my normal response has been to pity them as I see the challenges and not their character and personality that is as vibrant and real (possibly more so due to all they've endured) as you and I. Then tonight as I read my bible this jumped off the page: 'The human spirit can endure a sick body, but who can bear it if the spirit is crushed?' - Proverbs 18 verse 14. Wow, that summed up my thoughts today and I hope I will learn to view people and respond differently as a result of our time here.

Sadly 2 of Sam's room-mates have died in the past 2 days, so we felt sober today as our hearts went out to those families and we could understand a little of their sadness and the reality of where we are hit home again.

But if Samuel copes well with breathing on his own tomorrow, he could be back on the ward within 24 - 48 hours, so that's what we're hoping and praying for.

With love and thanks,

Shirley

Jasmine & Candace updates

Today I didn't go to school but we went to Starship and I stayed with Samuel. I also read Samuel a book called, 'Kiss Good night Sam'. The book was about a bear called Sam that would not go to sleep. He was waiting for something. And it was a kiss. Samuel enjoyed the book and he gurgled at me. I held my finger out for Samuel to hug and squeeze. Instead of squeezing me, he grabbed my finger and tried to suck it.

From Jasmine.

Samuel is cute and looks like he is a big baby for his age. I like his fingers because they are like the picture of baby Moses fingers in the bible that I have. I wish that I could hold him more often, but I can't do it because there are so many wires and I could get tangled in them. I love him alot and alot and alot and alot!

From Candace

Samuel's 2 infected wounds are clearing up nicely and looking so much better. 1 of his 3 antibiotics have been stopped. Today an ENT (Ear, Nose & Throat) specialist was to be called to come and take a look at his throat, as the Drs are not comfortable extubating him as his throat was so swollen and hard to intubate, that they don't want to risk having to put him back on O2 and potentially having his airway blocked. When we left around 5 they still hadn't been, so maybe tomorrow. Sam was awake a lot this afternoon and it was lovely to sing, coo and just hang out with him. He generally looks a lot better than a week ago and it will be good to have ENT's input as it is his oxygen requirement that is keeping him in ICU, not other health issues.

Shirley.

Laughter & Tears

Q: How can you tell you have been in hospital too long? A: When your bookmark is a colostomy bag! This week I was reading beside Samuel's bed, when his alarms starting going off and 2 nurses rushed to suction him. I quickly tried to move out of the way, but not wanting to lose my place in my book grabbed a flat object from the nurses station stuffing it in my book. After Samuel was settled I went to return to my original place and picked up my book.... to find my bookmark was a colostomy bag! The bizarreness of it hit as particularly hilarious and I felt the urge to snort out loudly with a belly-laugh..... but quickly managed to contain myself considering my surroundings and considering the other families huddled around their loved ones. My stifled guffaw subsided into a weird smirk and this may be the reason the social worker seemed to pop in an awful lot in the latter part of the week - I'm sure the nurse referred me!!!

But insanity aside I do recommend 'The Guernsey Literary and Potato Peel Pie Society' as an excellent read - thanks J & P. Such a lovely book.

Sam did not cope off his ventilation tube since the last blog. He was on CPAP but was gasping and in difficulty. At around 3am yesterday they intubated him again, but it took 6 attempts to get the tube in by an experienced doctor, as Sam's airway was very swollen. This is possibly due to acid reflux from his stomach. Yesterday we had a meeting with the ICU Intensivist (consultant Doc), Gastro specialist and nurse as well as his daily nurse. They were feeding back from a multi-team meeting the day before to outline a plan for Sam's care. It was a really worthwhile meeting and helped us to think through some more tough issues and to hear their thoughts on treatment and interventions... or not as it may be. It was useful but also hard as with each new complication looms a possibility of organ failure that is untreatable.... so there were plenty of tears yesterday too as that reality seeped through our brains.

Samuel's wounds are both very open and red and pusey, but with daily dressing and good care, plus 3 types of anti-biotics they aren't getting any worse. His white blood cells have dropped slightly today which is a good sign, as they rise when fighting infection. He's had a quiet day sleeping and hopefully gaining strength to fight this horrible germ. He still has a lot of white secretions from his lungs, but thankfully today they seemed to be thinner and milkier than Friday, which all are hoping means the infection hasn't spread to his lungs.

Clearly he can not breath unaided due to his swollen airway, but steriods that are normally given to reduce swelling can't be given whilst he's on these antibiotics... so it will be a slow process of giving him good care and reducing each risk one by one. He will be in ICU over the weekend and into next week.

I'm sleeping at home with the girls and Francis is with his son over the weekend, but we have lovely family time together in PICU during the days and the girls are so happy hanging out in Starship.

We just wander on each day knowing God's strength and hopefully wisdom amidst complex issues with Sam.... through the tears and the laughter... somewhere in there life is becoming 'normal' - well 'normal' for us.

Best wishes, Shirley

Thursday night update

This morning when the nurse took the dressing from the surgical incision in his stomach pus oozed from the sight. He was clearly in discomfort (even though on continuous morphine drip), so he was given a bolus (1 off extra shot of morphine) whilst the wound was cleaned - this involved squeezing out the pus and opening the wound, so that it can heal. His vesicostomy wound is also angry looking and looks worse than yesterday, so it is being closely watched and dressed too.

At around 4pm it was decided he was breathing well enough to extubate (take out full-ventilation tube). But after an hour on his own Sam was really gasping for breath and not coping - his CO2 levels were also raised, which meant he wasn't breathing out sufficiently. The Doctor came and it was decided to put him on to CPAP - pressurised O2. He is still very unsettled and distressed and they will check his bloods again this evening to see if his Co2 reading has improved - if it hasn't and if he is still not coping with breathing, they may need to re-intubate him whilst they re-assess him.

Tonight Francis is with him and I'm home with the girls, so Francis will spend this evening trying to settle Sam. To not be able to pick him up and rock him and to see him crying but not hear him (the tube in his throat pushes on his vocal chords) is distressing. His heart rate and blood pressure sky-rocket and his face is screwed up and red... and to not be able to hold him or nurse him to comfort him is just horrible. So we hope and pray that the nurses are able to keep Sam comfortable with medication whilst he fights these infections.

We're disappointed in the latest developments and sad for Sam - to see him struggling is unpleasant and if we could swap places we would.... but we can't.... so we continue to sit with him and talk with/hold him so he knows our love and voices in his struggles. We don't know what tomorrow holds, so we can only do today as best as we can.... and get sleep when we can!

Goodnight one and all, Shirley

SODs and MODs

It's my turn tonight to update you all on Samuel, so Shirley can have a break from blogging after a week of living up at the hospital and keeping everyone updated.

I flew in from Laos yesterday late morning, and got up to the hospital early afternoon after checking on Candace at home who was still suffering from a vomiting bug. It was such a relief to be able to hold Samuel after the scare he gave us all on Saturday when I felt so helpless and desperate to get home as quickly as possible. It was also my first time in PICU (Paediatric Intensive Care Unit) of Starship hospital, where Samuel has been since Saturday and is receiving exellent round the clock care. Samuel has more tubes and holes then when I left, as Shirley has already explained, and seemed unsettled and sickly, with a continued low-grade temperature.

This morning, Candace was back to her normal bright chirpy self so we all headed back in to spend the day at Starship with Samuel.

This morning Samuel was still looking unwell and seemed to be in pain, which was explained when his nurse noticed pus oozing from the incision that was made in order to insert the gastric

tube last Friday. She took a sample which was tested and confirmed the infection and he is receiving broad spectrum antiobiotics to fight it. Today his vesicostomy (relocated in last

Friday's surgery) is also looking red around the edges and a few stitches have popped, indicating another possible infection site. The nurse is keeping these sites clean and the surgical team will have another look tomorrow. Until now, Samuel has been fairly infection free despite his 9 surgeries, so we're hoping and praying the antibiotics will effectively clear up the infections over the coming days. He is still ventilated but the pressures are reducing as Samuel increasingly breathes on his own strength. There was talk of taking him off ventilation tomorrow, but we'll see how he copes with the infection and whether his breathing warrants being extubated.

The intensive care consultant has called a meeting tomorrow of all the specialist teams involved in Samuel's care, to put together a plan for Samuel's ongoing treatment now that he is out of NICU. With so many different specialist teams of doctors (SODs = single organ doctors)

involved in treatment of areas relating to their specialty (gastric, renal, urology,surgical), it's important to have MODs (multi-organ doctors) like the intensive care doctors who can watch the bigger picture and co-ordinate treatment to ensure that everyone is on the same page, including us. Shirley and I will be attending parent-teacher interviews tomorrow early afternoon but are will be briefed on the meeting outcomes later in the afternoon.

Lastly, I'm including a few photos of me with our Lao staff last week, as they were the main reason I needed to return to Laos and visit each of the three offices, including two overnight bus journeys to/from our field offices 12 hours south of the capital Vientiane. I needed to visit them all to let them know that I will be leaving World Concern at the end of September. As Samuel seems to be coping with the treatment and we are settling into the routine of life here in NZ, the time has come to put down our roots here and say farewell to Laos. I found it very difficult to inform our friends and colleagues last week that we would be leaving, but we know that this is the best place for Samuel and so that makes the choice clear-cut. Jasmine and Candace also need to focus on life here and come to terms with leaving behind their life in Laos, as up until now they have seen this as a temporary location while Samuel 'got better'. I will take them back with me on my final trip to Laos during their next school holidays in early October, so they can say final goodbyes and have some closure to that part of their lives.

Shirley's staying up at the hospital tonight to give me one more night at home to adjust to NZ time, and then we'll do a swap from tomorrow. Thanks for all the support and prayers for us all while we were separated last week.

Francis

Monday Night

Sam continues to be in ICU on full ventilation. He has had lots of mucousy gunge (non medical for respiratory secretions!) from his lungs each time he has been suctioned. Today he continued to be settled, although his breathing would desaturate randomly and then he would need a suction. Specimens of mucous, urine, blood and gastric juices were all sent to the lab to see if there is any bacteria present that is the cause of his ongoing low temperature (around 38.5). If anything is lurking the lab would have some indication of that in a few hours, but it takes 48 hours to actually grow the culture to determine what it is. His morphine has been halved and he remains comfortable.

He had an uneventful day which included his standard bed-bath and hair wash by me - got to have him looking nice for his Daddys return tomorrow! He is wearing a fetching red and black bootie on his hand as he keeps grabbing on to his ventilation tube with his vice like grip, but we don't want him to pull it out.

Candace continued to vomit today, so had a day at home with Aunty Victoria, Jas coped at school and Francis is hovering somewhere near Singapore as I write.

Tonight I had dinner with Anita (mother of Aria McDonald - check out website link to the right) and it was just lovely. So nice to chat with someone that has lived at 'Planet Starship' for long periods of time and has walked the road of concern with Aria. Was such an encouragement to just be with her and share the joys and sadnesses of our kids conditions, practical advice in regard to TPN and medical stuff and just knowing she has been there. We were laughing about how bizarre our lives were and how we would never had met if it had not been for the gift of our kids. So although we wish Sam & Aria were well, it's been lovely to have gained a friend or two on the way, that we wouldn't have otherwise!

Off to bed... Shirley

Sunday night 11 pm

Sam had a mostly settled day. The nurse tried lowering the O2 pressure being applied to his lungs, which went well for most of the day, then he seemed to tire and desaturated a lot in the last 2 hours of her shift. So he was put up again on higher pressure. There is no urgency to get him off -they want to do it when Sam is strong and able to and not to rush him. Initially they talked of extubating him tomorrow morning, but in light of the late afternoon developments they may revise that and leave him on for a little longer. He continued to have a temperature throughout the day (38.4) and a high resting heart rate (185). He responds well to paracetemol, with both temp and heart rate reducing within 20 mins of having it, but he is only allowed paracetemol every 8 hours due to concern over liver damage. So he lay mostly uncovered to keep him cool and I gave him a tepid bed bath to help.

He slept most of the day but stirs/grimaces on touching and voices. The girls didn't come in as Candace has a vomiting bug. I met them at the Domain (park next to hospital) and we fed the ducks and I got to see them for an hour - but it was in the fresh air and away from the hospital.

They've had a lovely weekend of sleep overs, cousins and different outings, but it's been hard on them too - Jasmine misses her Dad terribly, misses me, misses Laos and her friends and dogs, adores Samuel and is frustrated she can't hold him etc etc.... but she shows her sadness through anger and lashing out and is often misunderstood. I know this part of our lives is part of the tapestry of her life too, but we're concerned for her little fragile sad heart which is often hidden amidst hardness. We are hoping to take them out of school on Wed, so they can come and hang out with us as a family at the hospital - they love coming here, as there are stacks of cool books, play things, playground etc. So we hope some Mum/Dad time will be good for us all.

Off to sleep here, whilst Francis will be tucking in to a mouth watering Taco Salad at the legendary JOMA in Vientiane with friends (just a wee bit jealous!).

X Shirl

Sunday 6am update

Yesterday Sams bloods came back that he had a very low haemoglobin count so he was given a blood transfusion and albumin. He had a chest x-ray to see if he had asperated (fluid gone from his stomach into his lungs) but they look clear.

I was just with him and he is stirring and blinking a little - he's on morphine for pain relief, but is not sedated, although mostly sleeping. His heart looks good and rests on about 175. This is about normal for Sam, so they are confident he didn't have a cardiac arrest as his heart only dropped to around 115. He continues to be ventilated and they have been slowly lowering the pressures overnight and will continue to do so today as and when Sam responds.

He looks comfortable, a little swollen due to extra fluids given to him. He is on some new broad spectrum antibiotics incase the cause of his last episode is due to an infection. He had a temperature yesterday afternoon, which came down overnight.

There are a few theories as to why he stopped breathing.... maybe he didn't have enough reserves after the last operations, possible infection, possible asperation... but clinically there doesn't seem much evidence for the last 2. So we will just wait and see what today holds....

I've spoken with Francis a few times - it's hard for him being so far away. He's due to leave tomorrow anyway (arr. here on Tues morning), but he tried changing flights to today but they're full. It will be a long day for him, but I'm glad he will be amongst our very special group of international friends tonight, where he can be himself and will know encouragement and support.

I slept in a room reserved for PICU families 1 floor up from Sam. Families have 24 hour access to ICU, and I even wandered down in my PJs earlier to see him when I couldn't sleep. The girls will come up this afternoon to see him and me.

I feel peaceful that he is stable and in such safe hands - 1 on 1 nursing care, with Doctors in the room.

Will update when I have any news.

ICU again - Please pray

Please pray for Sam. At about 3.10 his monitor started beeping as his breathing and heart rate started dropping. I rang the bell, but thinking that normally he pops back - he didn't - the rates just kept falling. The next 10 mins was pretty horrible with the 'crash bell' rung, Drs and nurses running in to bag Sam etc....

He is now in PICU - Pediatric ICU fully ventilated and fully sedated. As I write they are putting some lines in him to be able to access bloods to do tests. They aren't sure why he stopped breathing - his heart rate went as low as 115 (that's ok), but his breathing down to 5.

It was awful watching our little Sam and willing him to breath....

I spoke with Francis - hard for him being so far away. I have Victoria with me (Sis'n'law) and girls happy with their cousins.

I don't have anything else to say... just that I'm not ready to lose him yet... please Lord help him through this tough bit.... he's been a fighter, and help him to keep fighting.

X Shirley

Friday Night

Samuel went to theatre today at 9am and had his herniated bladder repaired. They stitched up the previous vesicostomy and created a new one slightly higher up, which they have cathertarised. Whilst he was in theatre they also put in a 'G-tube', which will be a point of access straight into his stomach, removing the need for a nasal-gastric tube. The G-tube came back also with a drain and bag directly into it, and it is on free drainage. So he is back to 3 bags of fluids draining off him from different sites... but all temporary and with a plan to be removed in due course.

When Sam was in theatre I had a solid 2 hours sleep and woke up feeling so much better - I didn't realise how tired I was! But it helped the wait (which I dread) disappear very quickly!

We were about to go and get him from the recovery room, but were delayed by an hour as our ward was on lock-down due to a suspected fire in the sluice room! So I sat in my room and read my book and watched the fire men come and inspect the place. So by the time I got back to Samuel it was 2.30. We wheeled him back and he has been mostly settled, but has a very high heart and respiratory rate. He is on low dose morphine to keep the pain at bay and we hope he can have a pain free sleep to regain his strength.

I spoke with Francis and updated him on Sam and he updated me on friends in Laos. The girls came up after school and are excited about heading back to Uncle Grant and Aunty Sarah's for a sleep over with their cousins. They've had a good week with Anne - couldn't have done it without her keeping the girls ticking over... and bringing them up here to see me.

So will hopefully have a quiet weekend where Sam can rest and recover from these procedures and I will update the blog next on Monday.

Have a lovely weekend wherever you are. X Shirley

2 different worlds

Sam celebrated his 2 month milestone with another trip to theatre. The external left kidney stent was replaced, the internal right kidney stent was removed and his herniated bladder was put back in. Sadly by the time we had gotten back to our room, got him settled and went to change his nappy the bladder was out again! We knew that once the bladder had prolapsed it could continue to keep doing so - this is the third time, but we were hoping it would stay put. The surgeons came and took a look and have put Sam on the acute list for 9am tomorrow morning. I am not entirely sure if they will just repeat the procedure and hope it stays put, or they may revise things. We will find out in the morning.

So this is disappointing. Tonight Sam has finally gone to sleep, although he was clearly in pain, and needed panadol to keep the pain at bay and for him to sleep. He can only have panadol 8 hourly due to concern for his liver so I am hoping Sam copes ok, ready for tomorrow morning.

Tonight Francis will be sleeping in rural southern Laos - near a village where he sat this time last year with a family and their dying baby. The baby died because they didn't have the $10 to buy medicine and Francis' staff found them too late to help. Tonight I will sleep here beside my son and his thousands of dollars of equipment. We couldn't be in two more different locations if we tried. Being apart from Francis and thinking through the life and experience we had in Laos and the sudden upheaval of the past 6 months I can't escape thinking about the 2 different worlds we have existed in. Yet they are the same too - As parents the pain of watching a child suffer must be the same no matter location, language or religion, yet some of us are lucky to have access to education, health care etc.... and that is what is so very different. From where I sit tonight it's hard to reconcile the differences.....hhmmmm

Please pray Sam gets good rest tonight inspite of his discomfort and for a good outcome tomorrow morning at his surgery. Pray for Anne as she deals with the girls and for Francis as he meets with his staff who are working to improve the lives of people in southern Laos.

Sleep well, Shirley

Surgery Tomorrow

Today Sam's vesicostemy (direct bladder drain) herniated even more and is causing him considerable discomfort. The surgical team saw him and have scheduled him for the first afternoon slot tomorrow - that is 1.30pm. This is a simple procedure to put the bladder back in but if it keeps prolapsing other solutions may be needed. Whilst Sam is in theatre they will also remove the stent that was put in 2 weeks ago from his right kidney down to the bladder, which was always the intention. Also they will look at his left kidney drainage and possibly re-insert a stent if the current one looks like it needs it. So tomorrow is a 'plumbing' day in theatre, but although a concern, the procedures are thankfully relatively minor.

Today Sam got rather unsettled and was working really hard at his breathing - could be due to discomfort as written above. So his low-flow oxygen was increased slightly and that settled him nicely.

The gastro-team continue to challenge his stomach and are keeping a watchful eye on his input and output of all fluids. This is a complex balance and we will update you as and when we know more.

Sam is on 7 different medicines of differing volume, daily regularity and methods of infusion, so today I have been focusing on trying to learn how to say them (!), when, why, where and what for, so that I am fully aware of his care. It is a challenge for my wee brain, but again so good to have this concentrated time with him. I just LOVE being with him and hearing him cry and picking him up and having him settle in my arms with those big brown eyes.... He's lovely and a real gift to us.

Do pray for Sam as he gets to theatre again and for the bladder to stay in the right place.

With love, Shirley

Sleepyhead

Today Sam slept alot! Which we hope was him making up for an unsettled day/night previously and also fighting this cold.

The Surgical team came and checked his left kidney drain and bladder drain - not overly concerned at the moment, but will keep checking it daily.

Tuesday afternoon on 26B is a big ward round, after a multi-disciplinary catch up. As we are new to the ward, the team are still getting to know Sam and mostly the discussions were around his fluid intake and how to monitor that efficiently, reducing his TPN (intravenous nutrition) slightly (to give his liver a rest), and other gastro related issues. They are wanting to try putting a feeding tube directly into his duodenum. If this part of his gut works, it means that he could receive some milk/food this way, as it doesn't seem his stomach is doing much. Basically any normal nutrition he could take would be a benefit to him, as would lessen the amount of TPN he requires and help preserve his liver. So they are looking at the best way of accessing this - whether by a tube through his nose or through a tube inserted via his stomach. But as he still has some breathing issues (with this cold he is back on low-flow oxygen), the stomach would be prefered.

Today Sams' nurse started me on some basic training on how to look after his 'NG tube' (nasal gastric) by testing the acidity of the fluids in his stomach by retrieving gastric juices and placing on a ph indicator stick (howI wish I'd listened to Miss Corkery in biology and chemistry!!!). So these days are learning days for me, so I will be able to be confident to care for him.

The girls came up with Nana and Nana was with Sam whilst I hung out with the girls, did their reading with them and had dinner. The girls were very excited to be able to 'skype' with their Daddy in Laos from Sam's bedroom!

Off to sleep whilst Sam does. X Shirl

Monday Night

The Auckland skyline is my backdrop and Samuel slurping on his dummy is my background music! Samuel had an unsettled day, just grizzly and not happy to settle to sleep. He is now on continuous oral feeds, only 1 ml/hr, and every 4 hours they asperate him and remove around equivalent of 10 mls every 4 hours - so his stomach is creating plenty of secretions to digest the incoming, but doesn't seem to have the muscle action to send it south. So he gets uncomfortable and also full of air, and he doesn't seem to be able to burp.... so a grizzly day for him. But is hard to know what is just 'baby stuff' and what is a medical concern.

He seems to have the beginnings of a cold and is being suctioned through his nose to remove mucous, as it is affecting his breathing, so he has been put back on low-flow oxygen tonight as he needs a little assistance to help him over this blip.

His kidney are still draining well, but it seems the vesicostomy (bladder drain) has prolapsed a little again and causing him some discomfort.... so I will raise that with the surgical team tomorrow when they do their rounds.

So all in all just a day settling in to the ward and figuring out how the team here work - it is very different to NICU and will take a little to adjust to. The girls love coming up as there is a playground downstairs and they can cuddle their little brother freely... Today Anne (Nana) had her first cuddle with her grandson whilst I went downstairs and played with the girls.

Francis made it safely to Vientiane and will have a busy few days with his staff and friends, amidst jetlag and wishing he could be in two places at once. As you can tell Francis has the technical skills required to put photos in the right place.... I'm just pleased I managed to get them from the camera to the computer, so you will have to match them to the right paragraph!

I really enjoyed today - it's so lovely to be with Samuel and getting to know him. In NICU he was often so unwell that he was unconcious etc, but now it feels like I have precious time to get to know him, learn what he responds to, how to care for him etc, so I am really pleased I can be here with him and it is no hardship at all.... and the hospital food is surprisingly palatable!

Our big concerns whilst Francis is away is clearly for Sam to keep strong (beat this incoming cold he seems to have) and for the girls to feel secure and settled with their parents in 2 locations and with Anne & Rodney running the ship. It is lovely for me to be able to focus on Sam's care content and peaceful that the girls are in great hands.

With ongoing thanks, Shirley