Oh where to begin.....

Since Samuel came home on Wed, life has been a whirlwind! I had dreamed in my little fairytale way, that we'd get home and it would all be sweet and lovely and celebratory. Unfortunately

there weren't 2 other kids in my fairytale, wanting to be the main character! So although there was great delight .... the photos were taken which were posted a few days ago as we arrived back..... then I'm guessing 45 mins later it all turned to custard!

I woke on Wed and seriously I was just brimming with joy - I would tear up just thinking about taking Sam home and amazed at his smiling little face that had made it through so many tough times.... oh us people were so made to want to praise and be thankful and it was just wonderful to be in the hospital room and sing and pray and cry with Sam - all joyful! Then it was crazy trying to get all the pieces of the puzzle together to get out the door..... so much so that I didn't have time to do my hair properly or put on some decent clothes.... so my vanity was put on hold - bring on photo shop.... So after getting home and all our various expectations clashing - the girls were excited to have both parents home so instantly wanted to sit and read with us! Um the conversations went something like this: '... yeah there is this little guy next door that is screaming in pain and needs his drains emptying.... and I'll just be a minute... oh and there are 2 other delivery guys at the door.... just a minute.... we've just got to do TPN with the Biomed CEO..... just a tick... yes I do love you as much as Samuel.... how long is a minute anyway Mum???.... I'll be just another minute...' yeah, you get the drift... they were grumpy, I was frought and Francis was trying to keep the peace. So at around 11pm we collapsed in beds.... I say beds as one of us sleeps in with Sam and all his gear and we alternate so one gets a good nights sleep if the other doesn't.

So it's been busy sorting out his routines at home. Although we were doing a lot of his cares in hospital and administering his meds, here for the first time we had to draw them up and make sure they went in the right openings! On the first night I was interrupted half way through drawing up his 5 meds. I carried on and after I had given him 4 of them I looked down and saw I had 2 syringes of meds left! It was awful - I froze and freaked and Francis came and we sorted it out. He has 2 meds that are the same colour and the same amount, so Francis and I were busy licking empty syringes and bottles to match the flavours.... thankfully I hadn't given him a double shot of something. So that was another learning curve and we have devised a simple system of drawing them up and noting them.... doesn't sound like rocket science, but having never done it before and, in the midst of other tasks for Sam, having a system is good. So we have many little 'systems'. Tubs of sterilising water for syringes, tubs for his colostomy stuff, other sites, meds etc etc....

I was feeling really anxious for the first two days, when I realised I was dreading Sam showing a temperature or one of his wounds getting infected. I was dreading so many things that 'could' go wrong and we'd end up back at Starship. So yet again I've had to tell myself off and in the words of wisdom from the bible, 'be transformed by the renewing of the mind'. The mind influences our actions..... and I don't want to waste even a day ..... so I plod on knowing that each morning

when I wake God's help, mercy, forgiveness and joy are the foundation my mind needs to shape my day.

To see the girls wake up and race in to see Sam is delightful. They are desperate to help, so I let them do what they can - open syringes, choose his clothes etc - they love it. Sam is really alert and responding to the constant interaction. As you can see in the video above, he can be very chatty now, he copes well with ABBA and likes to dance to the radio - of course he has no choice in either, but it's fab to have him in our world. I'm finding I'm having to force

myself to stop being so task orientated and take the time to interact with Sam. It's so tempting after all these months of having no control to try to take it all back .... but although we can get some daily plans in place for his care, life is still uncertain - as it is for everyone. So I'm learning it's a better use of my time to sit and coo with Sam and let the washing stock pile a little.... not easy, but I know I won't get to the end of my life and wish I had spent more time ironing! BUT we are trying to enjoy Sam - our 'son' Sam, not the 'patient' Sam. On good advice from the nurse specialist we are trying to 'de-medicalise' him and do what we have to, but also be relaxed with it. After 4 days we're not there yet, but enjoying the process.

Last weekend the girls enjoyed the weekend at the beach with their cousins while we prepared the house for Sam's arrival. Today was another beautiful Saturday here in Auckland, and Francis took Sam and the girls to Mcdonalds for an ice cream followed by Cornwall Park for the afternoon whilst I got on and created more systems and tidied the house. We are weary - as much from the thinking and learning as opposed to sleep deprived... but hey what family with young kids isn't.

Anyway I must go - Sam's asleep so I can't use him as the excuse for the washing stock pile anymore! I've actually missed not having the time to blog these past few days - it's been a cathartic exercise for me as I'm forced to stop and take the mish-mash of thoughts and events and formulate them into prose.

Shirley

Home where he belongs

Farewell to Samuel's nurses and hospital room

Samuel is sleeping in his cot in the front room of our house as I write this blog at 11.15pm. It's been a momentous, surreal, stressful and physically/emotionally exhausting day but it's so good to have him home where he belongs. After packing up 5 months of accumulated plates, clothes, dolls, papers, fridge out of Samuel's room....and with suitcases full of medicines, syringes, lines, pumps....we said our goodbyes to the wonderful nursing staff and doctors and exited Starship about 2.45pm. Samuel arrived home to family waiting to welcome him and help us settle him into his new room. There wasn't much time to celebrate as we had to unload all the medical supplies and get ready for his first TPN hook-up at home, which was being observed by a representative from the TPN (intravenous nutrition) supplier who needs to ensure that we are taking every precaution to prevent the possibility of an infection through Samuel's central line which his TPN runs through. Typically, having done Samuel's TPN for weeks, tonight we discover a major air bubble in the line that required Shirley to have to disconnect the line she just spent 40mins connecting, in order to flush the air bubble out of the line. With Samuel getting his dinner, we all sat down to our first family dinner at home, although Samuel seemed to feel a bit left out and was quite vocal through most of the meal. Then we went to connect his milk that runs into his small intestine, only to discover that the newly supplied pump wasn't working. So it was a quick trip back to the hospital to grab a replacement pump for the night. And then I just went to change over his oxygen cylinder to discover that the second cylinder supplied from the hospital is faulty and isn't sealing properly when you attach the regulator. Fortunately we had some extra cylinders delivered today to be used in emergencies, which tonight qualifies as he wouldn't get through the rest of the night on the one cylinder and he drops down to 85 - 88% oxygen saturation when he's asleep and not getting at least 0.5ml of oxygen. So an eventful day with the inevitable teething problems, but the important thing is we're all here under the same roof - a step that 3 months ago seemed almost beyond the realms of possibility.

Homeward bound......

The day has finally arrived! You haven't heard from us for a while as we've been busy getting everything prepared to bring Samuel home. Due to Samuel's complex condition, there are so many different specialist teams and medical suppliers to co-ordinate in order to have everything lined up so we can relocate Samuel from Ward 26B at Starship Hospital to our temporary home in Kohimarama. Jasmine and Candace were treated to a weekend at the beach with their cousins over the long weekend just gone, which gave us the chance to race around buying all manner of storage drawers and cupboards to set up Samuel's room at home and cope with the mountain of medical supplies that will be arriving. We had a trial run bring Samuel home too as we were able to take him out in the car for the first time on Saturday. His first venture beyond the park next to the hospital included a social visit to our friends the Frews only 5 mins from the hospital, and then a further trip home for an hour before taking him back to the hospital. But today it's the real thing, he's coming home on oxygen tanks and we'll be setting up his TPN tonight without any nursing support. His room at the hospital will be kept for him for one night in case he needs to return tomorrow, but we're confident that won't be necessary as he's doing so well and he has managed to throw off the head cold that has been bothering him recently. I'm off up to the hospital now to pick up Shirley and Samuel and the next time you hear from us he'll be home and we'll upload photos of him in his new room! Thanks to you all for walking with us over these past 4 months & 3 weeks since Samuel was born and through all the ups and downs of his life in hospital. It seems surreal to almost have him home and we are so grateful for all those who have faithfully prayed toward this day and the dozens of doctors and nurses that have all played a part in Samuel's care. We'll see you on the other side.....

Ramblings on perspective

Today was... a day. And I shall leave it there for you to read between the very brief lines! Actually I won't - suffice to say that efficiency and intent don't always collide in the realms of hospital care. But tomorrow is another day and we shall see what it holds.

Sam is a bit blocked up with a cold and a chesty cough. He doesn't have a temperature and continues to be happy so we're hoping he can beat it off soon. The respiratory consult examined him as they are puzzled why his oxygen requirements seem to be increasing. We took him to radiology for 2 xrays which were to be examined this afternoon. Tonight his breathing will be monitored and re-assessed tomorrow. His weekly bloods came back with his biliruben levels having dropped their lowest ever down to 100! We shall dance on the table when it gets to double digits! Oh and last night I changed his nappy to discover a small poo! I was so excited, scurrying to find a sample bottle to store it in to show Francis and the Docs this morning. It was greeted with little enthusiasm by the Drs (possibly they have a unit at uni called, NPJ - 'Numbing Parental Joy' )but hey a pooey nappy to a mother is lovely! He continued to have 3 'pooey' nappies and some of the 'evidence' was sent to the lab to determine where/what it is.... it may be sign of infection... so that did quiet the 'cool stool' chant. We wait and see.....

Yesterday we were so pleased with ourselves as we took Samuel out in the morning for the first time, complete with his 3 pumps and oxygen. Sam was in his 3-wheel buggy which I was pushing and Francis was pushing the 6foot feed poll on wheels with the pumps. We ventured across to NICU to join in with their 5th birthday celebrations. It was so fantastic to see many of the Docs and nurses that had cared for Samuel and with whom we'd had many frank and sad conversations about his prognosis..... and it was just delightful to see their joy at seeing how well he was doing. So that was warm fuzzies all around. As we got in the lift to make our way there, a guy got in the lift with us, did a double-take and stared at Samuel and said, 'Man, what's wrong with him?'. It really took us by surprise as our perspective was 'look how great he looks - happy and less yellow and mobile'. I looked at Samuel thinking maybe he had just vomited or something else had gone amiss, then it dawned on me how he looks to 'Joe Blogs'. I think I blurted out something like, 'Oh he's SO well, all this stuff, well that's his normal'. Afterwards I realised we may need to prepare the girls for people's potential ignorance and insensitivities as he makes his way home.

The planning for getting Samuel home is intense and full-on. I was pondering this last night and as I lay on my hospital bed praying (6 more nights but whose counting?!) the word 'perspective' popped in to my mind. My mind went back to the first time I ventured to Auckland 20 years ago. Growing up in a small rural town with no traffic lights, little traffic (I gave way to a horse the day I sat my drivers licence... on way to the race course, not with a cart!) and where everyone knows everyone. Arriving in Auckland was incredibly scary - Traffic, motorways, high-rises, malls and 1 million people - it was expansive and unknown to me. Returning to Auckland after 15 years away having lived in London (9 m) and Bangkok (13 m ) it now seems like a large and easy comfortable city. Auckland hasn't changed much, but our perspective has. I was reminded of Isaiah 55 v 9: For just as the heavens are higher than the earth, so my ways are higher than your ways and my thoughts higher than your thoughts. I am so glad God has a bigger perspective than me. He sees all the bits to the puzzle and with that renewed knowledge my nervousness fades and my resolve to work with the teeny bit of puzzle I have to the best of my ability, with Gods strength is renewed.

I'll finish with a quote from Jasmine - 8 years, made tonight as we were talking about Sam. Her eyes lit up like she'd just had the most brilliant idea and she said, 'You know Mum, you should become a nurse when you grow up!'.

Time for some shut eye. X Shirl

Final week in Starship?

On Friday a multi-disciplinary team meeting was held to discuss all the various aspects of Samuel's care that needs to be addressed in order to get him home. The list is extensive - training for us for various care procedures, meeting with the home-care nurse to discuss the many supplies we will need and what days they will visit (probably daily initially), medicine requirements, oxygen tanks, lists of contact details and what/who/how to respond when Samuel becomes unwell again ecetera....

We have a lot to do at home in order to get it ready for his arrival and have been re-arranging each room to try and make the right configuration of storage and happiness for all!

I'm feeling a bit overwhelmed. I was looking back through Samuel's photos and it is amazing how far he has come. As I looked at shots of his 'before and after' various surgeries and how unwell he was the emotions that I had then came flooding back..... to the point I actually had to stop looking. Tears of delight are just below the surface as I think that in a weeks time we could have Samuel home - it's staggering to comprehend. Yet tears of anxiety are also competing under the surface as I'm slightly terrified at having him home and caring for him. To wake up, all 5 of us in the same house after nearly 5 months will be fantastic. For the girls to skip home after school and all 3 of us to be here will be lovely. I can't wait.... yet his care, or my potential inability to care for him as he needs also overwhelms me. Francis & I have been largely doing all his care in the hospital for the past 3 - 4 weeks, so we are confident with it... but we are confident with it knowing that if we muck it up we press a bell and a nurse runs in...... To not have that safety net will be a challenge for us to step up to the mark and to care for him as best we can. I know we will have great support from the hospital home-care team, from the Starship team themselves and from family..... but it will be an adjustment to looking after Samuel in the home setting. To have looked after him in the calm of our single room in hospital has been great, but it will be very different doing it with the girls around and the demands of home.

In a strange way we've become so used to our routine of being in hospital that I think I will actually miss it! We're so used to living there and have gotten to know the amazing staff that they oddly feel a bit like family.... and although I don't want to be back there any time soon as that will mean Sam isn't well, I know that when we do go back I will really enjoy seeing everyone again. I feel a bit weird for even thinking that as shouldn't hospital be a sad horrible ordeal? But although we've been through some hard times with Sam, we've been through it with the staff who have loved and cared for him, which leaves me with an overall impression of a deeply profound and special time in our lives - of which the caring staff at Starship have played a huge part.

As you can see I'm rambling, emotional and slightly philosophical again.... so I shall stop and update you on Sam and our week ahead.

He has started taking a bottle again and last night took 15 mls - woohoo! He's having about 2 bottles a day, when he is cranky or has been off his TPN for 3 hours so probably his blood sugars are dropping. His GJ tube has been sprouting leaks, which has been patched up with glue and sellotape, but will be replaced by the radiologist on Thursday. We are really hoping he can get a replacement in easily, as the one he has in was after 2 attempts and was a 45 minute ordeal for Sam. Tomorrow Francis & I are doing Baby CPR training and will meet with the nurse specialist to go over practical needs/details to get us home. Sam also has oral thrush, so we have re-started him on an antibacterial drug which is given orally 3 X day.

Francis introduced Samuel to the joys of technology - well audio and visual rather than medical! Samuel seemed to enjoy his time with Thomas the tank engine or whatever it was!

Well that's enough for me.... Francis is with Sam tonight and this is my chance at home to sort out 'stuff'. We arrived in NZ 6 months ago with 4 suitcases.... now we have 'stuff' everywhere!

Technical difficulties resolved

Apologies for the technical problems that prevented the uploading of video and photos while I was away in Laos, I have to accept responsibility as I left Shirley with a camera which used a memory card that didn't fit our laptop. So for all those who have missed the multi-media aspects of Samuel's blog, this edition will be light on text to make room for the latest video and photos of Samuel.

He was a different boy to the one I left 10 days earlier, a lot bigger and more interactive as you'll see from the video. His hair was also longer and curlier and his hairline had receded

from his eyebrows! He was also coping well with 4mls per hour of formula and down to 20 hours per day on TPN, all good signs of progress in the right direction. Yesterday he was increased to 5mls per hour of formula directly into his jejunum so that's starting to add up over the course of 20 hours. Shirley's up with him tonight and I'll make this quick as I'm off to enjoy a video without any feeling of guilt that I should be studying instead. My Masters dissertation is on its way to the UK as my final submission towards my MSc in Development Management which I started working towards when Candace was born. Enjoy hearing Samuel chat with his mum....

T.P.N, I.N, I.P.N or Wiggle Juice

T.P.N. stands for Total Parenteral Nutrition, BUT this is kind of false information, as in Samuel's case he also receives a little nutrition via the milk to his GJ tube..... so a more accurate name for it is now I.P.N (Individual Parenteral Nutrition) although some of the medical team just refer to it as 'I.N.' as in Individualised Nutrition... So having been confused more than once as acronyms are flying around the room, I'm now sticking with T.P.N. for info sake as that's the name the pharmaceutical company call it. Our girls call it 'Wiggle Juice' which is the name they've adopted from Aria (check out http://aria.org.nz/) which is possibly a more accurate term!

Today I continued with my hands on training of hooking Samuel up to his TPN. With neither of us having prior medical training we need to get proficient with the sterile technique so that we are so familiar doing it without thinking, so we can cope with Sam when he gets home. Today we met with the gastro nurse specialist and the Bio-Med CEO - the company that will make and provide TPN directly to our home which is requested on prescriptions/blood results monitored by Starship.

Francis will focus on being trained this week (I had the days he was away), Bio-Med are ordering our various supplies (fridge for TPN storage only, pump, pole, trolley etc...) to be delivered over the next 10 days. After checking various people's diaries, we are now aiming for a more realistic date of around Oct 27 to get Samuel home. This will also give us time to sort out our home to be able to fit in all that is needed.

Today Sam was generally happy although was vomiting a lot - his milk feeds were stopped for 4 hours this afternoon to see if that would help - it seemed to. He is looking less yellow, and we're hopeful his weekly bloods that are done on Wednesdays might show his biliruben going down (liver function test). He is very chatty and animated and lots of smiles when he is awake. An oximetry test was done on Samuel over 24 hours and his oxygen requirements are variable - so he now has O2 wafting near his face as he sleeps whether day or night. He doesn't need it all the time, but clearly does need it at other times so this will be a challenge for us when he is at home.... so we need to pin down some more details of how to care for him at home with the respiratory team.

Aunty Sarah & Nana were stars over the weekend! Sarah roomed with Sam on Friday night and Anne stayed Sat & Sun, so it gave us a whole weekend at home with the girls, a chance for all to catch up on sleep and a day to move furniture around the house, sort out trip washing, put in some better storage and bake biscuits with Candace! It really did help to anchor the girls to their new 'home' and they were relaxed and happy as they skipped off to school today.

Tonight Samuel has his Daddy bunking in with him again and I'm home with the girls who have done very well to get through their first day of school being rather jetlagged. We're hoping they'll sleep through tonight and not be wandering in between 1 & 3 am like last night!

Tomorrow at 9am Francis & I will both meet with Karyn (nurse specialist) to continue our TPN training. This week will be full with training in the day and then TPN hook on around 6pm each night.

Thanks again for your ongoing love and care and prayers for Samuel. X Shirley

Home Sweet Home!

Francis & the girls landed back in Aotearoa at lunch time, so it was lovely to see them back in hospital with Sam - and to notice how much he's grown!

Sam is now 5.8 kg and has been on 3mls of neocate (milk formula) per hour, which is administered through his gastro/jejunum tube by pump. He has been on this for 21 hours a day, which is the same amount of time he's been on his TPN each day. The past 2 weeks his weight has been gaining rather rapidly, so as of yesterday they are altering his TPN to compensate for the extra calories he's gaining via the milk. Today the Drs agreed to reduce his TPN by 1 hour per day, so he will now be 'eating' for only 20 hours a day and to increase his 'milk' again to 4ml/hr.

Last night an oximetry test was taken on Samuel, to follow his breathing through the night. The information showed that he is still needing oxygen assistance when sleeping, so although he's been doing well in the day with breathing room air, at night he requires oxygen, so it's looking like we will be heading home with O2 for the nights.

Yesterday he had his 3 monthly immunisations (a month late due to illness etc..) so he's a bit grumpy and subdued today. The milk/jejunum experiment continues. He seems to cope fine with up to 3ml per hour but when it was put up to 4ml he was really unsettled with his stomach acid ph level markedly higher - this is easily tested, as we just asperate his NG tube and put some of the fluid on a ph indicator stick. 7 is about neutral and normally he has been on 6 or 7, but this week he has been down to 3 and 4, so has been having a lot of discomfort with acid reflux (well that's what we think). But we also need to challenge his system and see if he can adapt to having some more milk, as the more milk he can have the longer and stronger his liver will be, as less TPN will be required.

Tonight Francis' sister, Sarah, is bunking in with him for the night and tomorrow night Anne (aka Nana and Mum to Francis) will be sleeping in with Sam so that we can have a family weekend, which we are hoping with help anchor our tired little girls back to NZ soil. It's so lovely to have this time together and to have family pitching in - last week they were dropping in meals, sitting with Samuel to give me a break, helping me with picking up stuff etc etc.... again it's amazing to have a supportive family. It's not something we take for granted as we have met many people on the ward who are very much struggling alone with their sick kids - we can only imagine how difficult this can be.

The girls arrived back having had a wonderful 10 days of constant playdates and sleep-overs. Francis had a hectic time packing up the house, work meetings, selling stuff, juggling jetlagged & emotional girls.... so after he spends this weekend tweaking his FINAL Masters paper and getting it couried to the UK on Monday, he deserves a bit of a break... but that may just have to wait until after he has perfected his TPN training and rearranging the house/putting up a cot etc.... no rest for the wicked eh!!

At last with Francis back I can post some cute photos of our rather pudgey boy! Every inch of his determination and strength that got him through 8 operations and multiple infections oozes from this defiant photo of him ripping his prongs from his face.... it speaks volumes to me!

A random piece of info: Samuel only cries if he is pain.... he doesn't have dirty nappies and he doesn't know hunger (TPN suppresses hunger) so he doesn't cry when normal babies cry.....

Well it is lovely to be home and to have the rest of the family home too.

4 Months Old Today!!!

What a great day for Sam!!! He has regularly been ripping the nasal prongs off his face - today was no exception.... so tired of the ongoing battle and as he didn't seem to set any alarms off in regard to his breathing we left them off and just waited and watched.... and he did great! He had a few de-saturations but then he recovered... and he's now been breathing on his own for about 10 hours as I write! So we will see how he goes tonight.

Today after his TPN and milk line were disconnected it dawned on me that Sam was free as he didn't have oxygen tubes - so I picked him up and walked up and down the corridor for the first time..... it was soooooo00000 cool.

Up until tonight Samuel has been having 4 hourly checks of his urine output, colostomy bag and nappy weighed, even through the night. As he is getting bigger and stronger to have it done so regularly is not important. As long as an accurate 24 hour fluid balance is kept that is sufficient for the Drs/dietician to calculate the right fluid input for his nutrition.... so tonight for the first time we're going to leave him alone uninterrupted and see how he goes! He has a colostomy bag, nappy and catheter bag on anyway, so we will just empty and weigh them in the morning. So I'm off to try and settle him for our first nights full night.

Francis has a big day ahead with the moving company packing up our house in Laos... with a mouse. The girls are loving playing with their friends but it is dawning on them farewells are getting closer. It will be hard for them, but also so important for now. I've missed them all so much, but not sure in what emotional state they will be in when they return.... but we pray for wisdom as to how to work with them so they can work through all the turmoil inside their little hearts. It will be so lovely to have them back!

Off to see if Sam and I can't get a full 8 hours in a row.

'Thank you Lord for real progress with Sam this week - for his happy and content nature and for helping his lungs develop - it's so awesome.... we're so stoked and grateful to you. Please keep Francis, Jae and the girls safe as they spend their last 2 days in Laos. Thanks that none of what is going on is unknown to you and we ask that you help the girls to deal with the sadness of saying goodbye to their dear friends and life in Asia for now.... but help them to be excited to be back as a family and to see their little brother. Thank you we have a family that we all love. We pray for the desperate people in Samoa and Indonesia that lost theirs in a moment - bring them comfort as they mourn and rest from their fears as they sleep tonight'.

X

Good News

I had a very cute photo to post, but can't find the right lead to upload it, so it will have to wait. BUT we had a really good end to the week. Sam's blood results came back showing that his biliruben level (liver function indicator) had dropped from 127 to 102 in a week. He definitely looks less yellow, so I wasn't surprised to see this in the results, but are really pleased. He is coping fine with having 3 mls every hour of pre-digested milk (don't ask me how that works - I don't drink it and regurgitate it like a bird if that's what you're thinking) and they will increase it to 4mls/hr on Monday. He has been having his medicine administered directly into his jejunum and again he has had no bad reaction to this. His ilieostomy is now producing some harder faecal matter/milk solids, so that is positive too.

Oh and he managed to shoot me with a fountain of urine from his penis which was just wonderful - I was so thrilled when it happened! It seems that quite a bit or urine comes out of the normal route as well as his vesicostomy now, so that's great too.

So we've had a lovely week just hanging out and Sam has been settled after the initial blip on Tuesday with his kidney not draining. I've had a mix of some visitors and time to read, ponder and pray, watch t.v. - it's been quite relaxing. We are so thankful for the skills and care of the team here at Starship and how their skills and God's hand have sustained Samuel and worked in his life and ours - I take little Samuel's hands in mine and pray with him at the start and end of each day.... they are special times where Samuel will settle and stare and smile. It is lovely to see his wee face cooing as I thank God for this little life.... and I'm sure Samuel knows Gods presence in a tangible way.

Francis and the girls have had a really busy time - lots of people to see, jetlag, heat and emotions to contend with - so I definitely got the easy bit by staying back here with Sam. They have a busy week ahead so I'm conscious of praying for strength especially for Francis as he has many practical things to do, and also the girls emotions to be aware of.

I'm off to watch a dvd and eat popcorn with Aunty Toria - a nice way to pass a wet and windy Saturday afternoon in hospital.

Best wishes and ongoing thanks for your love and prayers. Shirley

Thursday lunchtime

Quick update - Sam had a great night - really settled, urine draining perfectly, no temperature and just plain happy and contented. He does have 2 different infections at the moment - 1 in his vesicostomy and 1 in his ureterostomy - as he has 2 completely separate urinary tracts, he has managed to have 2 completely separate infections. The cultures came back showing that one is resistant to one type of antibiotic, which is needed to fight the other infection. So he is on 2 different antibiotics for the next 7 days to hopefully clear these. We continue to try dropping his O2 requirement, but within a few minutes he starts desaturating, so he is popped back up. He's not on much, but we will slowly and persistently try to lower this. Today he weighed in at 5.5 kgs, so he is getting quite chunky and putting on weight nicely.....just like his mother.

This morning I was woken at 6.30 and asked to move my car, which was parked in a family designated car park. 2 huge trucks had arrived to drop off some new hospital machines and no warning had been given. So I throw on my clothes and stumble out looking like I had just stumbled out of bed dishevelled and unimpressed. 'G'day beautiful', one of the guys shouts as I arrive - his sarcasm clearly dripping as my hair was on all angles and I was anything but! I get to the car to discover that I have a flat battery as I had left the lights on when I parked 2 days ago!. The 6 hulking blokes stand around rolling their eyes as we wait for the security firm to arrive with jump leads. I then continue to embarrass myself by not being able to find the lever to open the bonnet - one of the blokes sneeringly comes to the rescue. I put the window down as I am backing out to say thanks, and drive away and repark.... and turn off the key, BEFORE realising the window is down and the battery wasn't re-charged sufficiently enough to turn on again.... so I nonchalantly wander back to the security guy to discreetly ask him to come with the jumper leads, but he non-discreetly hollers, 'Ok lovey, I'll be right over with the jumpleads - where are you parked?'.... more eye rolls. So I would like to apologise to the female readers as there are 6 blokes in Auckland that today had the stereotype confirmed that woman are dizzy and useless when it comes to cars. I'm so sorry.

Got a text from Francis & the girls - they'd had a great day in Bangkok with friends and have now arrived in Laos. Francis is busy sorting out our life possessions and the girls are happy to have playdates with friends. Laos was hit by the typhoon and some of the towns that World Concern work in were hit by the deluge but I don't know anymore than that.

Must get back to Sam. X Shirley