Santa Parade

2 weeks ago there was a competition in our local newspaper to win tickets to sit in the grandstand for the Auckland Christmas parade. You had to write telling why your kids deserved to sit there... so this is what I wrote: I would like to surprise our 2 girls with tickets for this parade as they have had a tough year. On June 6 their brother was born and he has been in Starship since then, having undergone 9 operations and been in ICU and on the ward since then. For the past 5 and a half months our girls have had to cope with being juggled around Samuel's needs and only having 1 parent at home each night, as we take turns alternating staying in hospital with Samuel. We haven't had much time or energy to do activities we would like, like taking them swimming or to have friends over to play. We are so proud of them - how they love their brother, yet have missed out on many normal things because of his needs, yet they don't complain. We would love to have the opportunity to do something fun and normal that is a seasonal distraction from the slog of caring for a chronically ill baby whom we all adore.

So I must have pulled at someone's heart strings and we won some tickets! Then we get a phone call from the Auckland City Council saying TVNZ wanted to film a family at the parade and they had selected us from the letters received.

For those non-kiwis this Christmas parade is an institution, having run for 80 + years and around 250,000 people attend. Francis took the girls to church in the morning for the Christmas play practice then made their own way there. I stayed with Sam making sure I had covered all the bases with his care and figured out timings/milk/tpn hook off/should there be a power cut etc etc and handed over to Aunty Toria & Aunty Karlene and ran to catch the bus. After some coaching from me to the girls like, 'please don't pick your nose', 'please try to be happy' etc... Jasmine was very '8 turning 18' with mumblings about floats being 'babyish' and not even a little impressed with the Santa float as hey, she knows who the fat red guy is also known as (trying to be discreet for all little readers out there!). The camera guy and Sarah the reporter were very discreet and we hardly noticed they were there so could just get on and ooh and aah at the right places (or mumble if you were a certain 8 year old). The editing department clearly did a great job as the 1 minute segment looks like we were one big happy family!!! Then we got back just in time to do Sam's next bunch of cares and have a tv dinner watching ourselves on the news! So it was a lovely afternoon out and was pretty cool to be able to see everything and not be amongst the hot standing throng on the street. You can watch it on the internet at http://tvnz.co.nz/national-news/huge-crowd-auckland-santa-parade-3200337/video.xhtml

Sam missed out on all the excitement - we actually toyed with the idea of taking him, but so glad that sanity prevailed. He's had a really happy weekend with lots of stimulation as we had a visit from the lovely Hawkins family yesterday morning, then a Davy family get-together in the evening. So it's been a fun and busy weekend which we all enjoyed.

On Friday I had a 'respite carer' come for 3 hours and it was great to have her help around the house - apparently our kitchen has a bench - it was a welcome find!. This week will be the first full 5 day week where we will have daily afternoon help and I can't wait! It really is such a help having another pair of hands. It will free me up to do some much needed extra physio with Sam. Anne (Nana) is also coming in weekly to play with Sam and the girls so I can do other things. So we feel like we're getting into a routine - I even went for 2 runs last week... well jogs I guess... oh alright they were possibly just fast walks, but hey it was a start!

We have a saying in our house, 'A happy wife means a happy husband'... it could now be, 'A happy Sam means a happy family'.

Have a good week. X Team Davy

All Night Long!

For the first time ever, Sam slept all night! He didn't once wake screaming in pain, choking or pumps beeping etc... so he slept from 8pm to 5.30 and it was fab! Which meant I slept well (it was my turn in his room) which was a bonus!

Yesterday we had our weekly outpatients appointment where he was assessed. His outputs are all looking good so he has now been increased to 9ml an hour of milk - I was reading back to a blog when he was about 19 days old and we were excited that he was on 1ml of milk every 4 hours! He has really come so very far! He continues to be putting on more weight than he should be considering the small amount of lipids he is on, so they took bloods to do a thyroid test as it could be he is not metabolising as well as he should be. This could also be a reason why he has a 'short stature'. He has always been short for his age and he is not growing as quickly in height as in his girth. This too is a medical problem I share with him.

We have had such a fun week! We are so thankful that Sam seems to have a really good quality of life. He genuinely is so happy and smiley and laidback, unless he is in pain. This week he attended his first birthday party when Francis' younger brother Eddie and his wife Karlene came over to celebrate Eddie's birthday. We have taken Sam to the beach with good friends the Schein family visiting from South Africa, and been a couple of times to pick up the girls after school. When at home we are able to wander around the house with him as he has around 60 foot of oxygen tubing. At one stage I got rather adventurous and put him in the front pack (all 6.7 kgs of him!) and had the oxygen cylinder on my back in a special back pack and went out to get the girls from school. I looked like some strange land-loving scuba diver! It was only about 15 mins in total but it was such a workout!

Sam loves it though and is mesmerised by the stimulation of moving trees etc.... oh I know this is such boring new mums stuff that people bore others with their babies achievements..... but it is so lovely to see him doing normal things like looking around and reaching for things... I just have to share it all.... At dinner we bring him through in a bouncy chair thing and he sits looking at us smiling and gurgling while we eat. It's so cool being the 5 of us in one place. I know it will be even harder when we have to spend time back in hospital....but I'm not thinking about that and just taking time to smell the roses.

This week has been busy trying to sort out support for us at home. The days are full and there just is no extra give should anything happen, like last week when Francis had a family funeral and all our stuff arrived from Laos..... so then Sam comes first and the domestics crash down around us - but we haven't resorted to turning underpants inside out yet! So we finally got funding through for carers to come to support us and had an assessment for some further home help. We realise it is only going to get busier as Samuel gets more mobile and older and determined to rip out all his non-natural appendages! So for now we have arranged for help Mon - Fri for 2 - 3 hours each afternoon, which will be great. We also need time freed up to do physio with Sam as he needs one on one time and have been given exercises to do with him.

We also felt it was important to keep in touch with the girls, as we just haven't been able to, but now can. So I'm just doing an hour a week in each of their classes which is lovely to get to know the kids they talk about and to see their relationships and concerns in school. The girls are smothering Sam with love and kisses and so keen to be with him and remarkably accommodating to the time we need to be with him.

We'll update the blog as and when we have news, but assume 'no news is good news' and we're too busy enjoying our time together to update - or busy scrubbing the bathroom - preferably the former!

X Shirl

Home Sweet Home... again!

Yeah - at around 6pm tonight we arrived home. It is so nice to be back! Need to do washing and sort out stuff for tomorrow before doing Sam's 10pm routine... so this will be short and sweet.

Sam is back to .5 litre O2, which is what he was when last home 15 days ago. His blood results are surprising - to us he looks better, but his biliruben (liver indicator) has gone back up from the 70's to 90. When we drain his ureterostomy (left kidney) the urine has been quite bloodstained, so we are watching that and if he spikes a temp we will head straight back in.

BUT generally he seems pretty well and so happy and relaxed - even after having his two 5 month immunisations yesterday and another one today! He's asleep now after laughing at his sisters - Candace has been teaching him karate (thrusting his arms about) and Jas has been doing 'where's the baby' - all to Sam's delight.

Oh and the Drs have increased his milk feed to 8mls an hour and are reducing the lipid content of his TPN to compensate, which means his liver wont need to work as hard, so that is really encouraging news.

Well I gotta go - house a tip and tomorrow Francis is leaving really early to hire a truck and pick up our possessions which arrived by boat, which MAF cleared today.....so I need to make room for the Christmas tree, sewing machine, piano and a few other 'can't do without' items... all the other stuff will be stored in a friends garage until we relocate next year...then it will be like Christmas all over again.

Nite nite, X S

Plod plod plod....

Samuel had a quiet weekend, where his oxygen requirement was monitored closely, but otherwise nothing much to report. He is still slightly wheezy and is on 1.5 litres of oxygen, but he was on 0.5 at home, so they will gradually reduce his oxygen and see how he copes with it.

Today he went for a chest X-ray to see if he may have a secondary infection - we will hear from the Dr on their rounds tomorrow. He also had a dye test done on his stomach in radiology. The Dr injected dye into his GJ to check that the fluid was still getting to where it should and the tube hadn't moved since it was put in 3 weeks ago. This was done as Samuel has had really bad reflux and the fluid is clear green and a pH reading of 1 or 2. This is extremely acidic, and normally would be about 5 or 6. So although Samuel has been overall quite well, he will wake suddenly screaming and throwing back his head in pain. This can go on for 5 or 10 minutes until he settles. So one thought was that maybe the feeding tube had moved and was causing him problems, but the test showed that wasn't the case. It may be that a change in some medicine recently is the culprit.

Anyhow we are desperate to get home.... it's nearly 2 weeks since he was readmitted and frankly I'm so over the solo parent thing. Francis and I are tired of catching up by phone and are hoping that Sam will be well enough to get home sometime this week. So we continue to pray that his lungs get stronger and that his stomach problems can be resolved so that he is comfortable. Francis has been busy doing the MAF clearance/port authority paperwork for our belongings that docked today from Thailand. So this week he will be busy running around sorting that out.

Yesterday the 5 of us took our first car ride to see friends - we all managed to squeeze in, with the oxygen bottle wedged under the front seat. It felt so normal to be out for the afternoon together and was all the harder dropping Sam & Francis back to hospital and the girls and I returning home alone. It did take both of us, plus about 10 minutes to get him and his gear in and out of the car, but it was worth it!

But, we know that we will be 'frequent fliers' at Starship, so we have to deal with the fact that he needs the extra medial care at times and we have to work around him. That's not so easy for the girls to swallow......

Anyways, time for bed.

Grapefruit Marmalade

Tonight I'm making Grapefruit Marmalade - the grapefruit and lemons freshly picked from trees around our house. It feels like life is normal listening to the spin cycle of our washing machine whilst I'm in a house making jam... and helps the evening pass quickly.

Last night Samuel was pretty good - just a couple of times waking and needing to be burped/asperated...then he went to sleep quickly. I was woken about 3am by some drunken louts and police outside the emergency department which is below me, but the noise channels up the building. I did toy with the idea of hollering 'SHUT UP... there are like 300 people trying to sleep here!' from my 6th floor window, but then realised I would have woken up the rest of those not already awake with their skirmish. Maybe I'll take water balloons in tomorrow night.... hmmm now that's an idea!!!

Samuel continues to improve slightly, but slowly. Today the Drs said that we'd still be here over the weekend and into the start of next week, as Sam's respiratory requirement is still higher (he went back up to 2litres last night) than he was when he was at home. We're happy to stay where he is best, but frustrated as it would be so lovely to be all back under one roof again.

This afternoon Candace and I made a pavlova - inspired by the book 'Mrs Mayors Pavlova Palaver'. So that was fun and nice to just hang with the girls. They haven't been in to see Sam this week - but are keen to head in tomorrow for our tv dinner - which is fish'n'chips sitting on the bed watching a dvd.... and of course they'll get to see Sam.

Our hearts are heavy this week as our friends daughter Aria (www.aria.org.nz) is deteriorating and the Ministry of Health are delaying the decision regarding transplant.... it's been dragging on for months and things are very serious now with Aria's health. If you have time do check out her website and pray for this whole situation.

Best wishes, Shirl

Improvements on all fronts

Today Samuels breathing improved and he is definitely more alert and happier. He is coughing up a lot of gunk and that is good news. His chest sounds less wheezy, but still a bit rattly.

His liver numbers continue to go down, now into the 70's. The milk formula he was changed to to see if his system can cope with partly processed milk rather than totally processed has been a success. He continues to take it and the right amount comes out his ilieostomy bag. Now that he is on TPN for only 18 hours a day he is really getting hungry around 4pm. Because he is so hungry he is much more desperate to drink from a bottle, so he is having around 30 mls of pepti-junior (milk) orally each afternoon. And the good news is that it is managing to continue on through his system.

So we've been encouraged this week to see lots of little improvements.

No-one is rushing to get us home as we want to ensure his breathing is back to atleast what it was before (.5 litre o2). So we could still be in hospital for a few days. We are making the most of the time to sort out some people to offer respite care/home help which is being funded by various grants/trusts. It's great to have this facility and we will be making the most of it, to ensure the general well-being of all 5 of us!

Tonight was hard with the girls - we thought they had been doing so well, but tonight there were lots of tears and big questions and anger flowing about being here and not Laos. With their child-like minds they want simple answers, but there aren't any.... so they are frustrated as don't feel that I'm answering them. It is hard for them going back to 'parent swap', so we are trying to give them some slack, but it is heartbreaking to hear some of the things that come out of their mouths..... but we've always said they can talk to us about anything anytime and I'm glad they feel they can......even though we don't have the answers.

I dropped Mum at the airport this morning so she could get to Napier to see her newest grandchild. Congrats Justin & Elaine - we look forward to meeting little Mackenzie Bell sometime.

I'm tired - Samuel slept well last night, but the baby next door didn't...... may take in earplugs tomorrow night!

X Shirl

Once Upon a Time....

Once upon a time in the land of the long white cloud there lived a King, Queen and their 2 princesses. One day the Queen gave birth to her first son, whom they named Prince Samuel. The Queen & King and princesses loved their son very much, but were so sad as he was very sick. But they were relieved that he could be given the best royal treatment in the land at Starship.

5 months later and Princess Jasmine & Princess Candace were a spot jealous of all the attention the new prince was getting and were sad as they were missing spending time with the King & Queen. Sometimes they remembered days of old when they had lived in a land far far away and they wept because they wanted to return but couldn't. One day the princesses skipped happily home from school waving invitations in their hands. The school was to celebrate NZ Book Week and all the children were invited to come dressed as their favourite book character. After scouring the royal library they decided on Puss'n'boots and Little Red Riding Hood.

The Queen thought this would be a wonderful opportunity to work with the princesses and have some quality time together, so she requested the company of the Queen Mother, who merrily arrived with sewing kit in hand.

The Princesses weren't very excited about making costumes as they wanted to raid the royal coffers and buy the best outfits that money could buy. The Queen explained as sweetly as possible that this just was not going to happen and they'd all have a jolly good time being creative and make something themselves. So the Queen and the Queen's mother went to the local charity shop with $10 and bought old jackets, ribbon and an old hat and set to work. The girls watched on and then became enraptured in the excitement as the costumes came to life - cuffs off the jacket became tops of gumboots, a snip snip here and an old basket from someones rubbish pile to boot!

The day of the fancy dress arrived and there was great excitement in the Palace as the Queen applied make up and walked them off to school. The King was not in attendance as he was looking after prince Samuel in hospital, but although he is talented at many things, applying make-up is not one of them! He got to see his princesses after school and to hear all about their exciting day.

The princesses didn't win any prizes but Princess Jasmine said that she'd had so much fun helping make her costume that she didn't mind not winning...and that it was much more fun and better than buying one.

We do not know how the story of this King, Queen and their family will end. But we do know, just like princess Jasmine found out, the time and process of being and working together is what really counts.

Prince Samuel continues to be in hospital and today had an ongoing low-grade temperature, wheezy cough and fast respiratory rate, so he was possibly worse than yesterday. Tomorrow will be day 4 of his virus and typically day 3 - 5 are the worst, so we've been warned not to be distressed if tomorrow he is even worse. We continue to pray to the God, the King of Kings for prince Samuel's life.

..... and they all lived muddling along together......

Sleep well. X

Update....

Samuel had an unsettled night and when I saw him this morning he was on a humidifier and oxygen - the combination was keeping his cough loose which was good. He definitely is very wheezy and was desaturating a lot during the day as he struggles with his prongs! He had a slight temperature and a bit grizzly, but nothing out of the ordinary when he has a virus. So they continue to monitor him closely and he continues to smile in between coughing and wheezing.

After his monthly blood results the gastro team have decided to increase the volume of the fluids he receives, as his urea/kidney function had deteriorated slightly, so they were hoping extra fluids may help this. They are also continuing to reduce his calorie intake as he is still putting on weight at a faster rate than he is growing in length.... so he is turning into a ... mmmm.... the medical term I think is 'porker'. His extra weight could be due to the feeds he is receiving directly into his jejunum. It's potentially a good sign that his body is adapting and taking in nutrition from these feeds, but until it's definite he has this capacity he is still getting his full nutritional needs via TPN. Neocate is a pre-digested milk, so his body doesn't need to process it but just absorb it. As this looks like he is coping with it they are now going to switch him over to a different milk formula, that is only partly digested, to see if his body can cope with breaking it down first and potentially develop his gut more. As his liver numbers are doing well, they will also reduce the time he receives nutrition from 19 hours to 18 hours from tonight. So this means he will be free from his tubes from 12 noon to 6pm, when he is much more portable as he only requires O2. It also means that he will get hungrier so will hopefully be more inclined to want to take oral milk bottles. This afternoon he guzzled 20 mls and had no adverse effects.

Sam was a bit grumpy and definitely wheezing and coughing when I spoke to Francis tonight, so Francis has already booked his bed here tomorrow night so he can get a good night sleep and I'll be back at hospital. The girls weren't sure why Daddy had to have 2 nights in a row at hospital. When I explained that it was either me or Daddy that would be with them tomorrow morning helping put on their face paints/make up and costumes for the school fancy dress day....they quickly realised that there was wisdom in our planning!

We're praying for Sami tonight that his lungs can fight off this infection and he can sleep and get stronger.

Best wishes, Shirl

Back to hospital..... hmmmm

Well we had a GREAT week - it was so lovely to have Samuel happy and well enough to be home, interacting with us all. We've had picnics on our front lawn, many special friends to visit and my Mum has arrived for the week. Yesterday we returned to Starship for our first outpatients appointment. Bloods were taken, Sam was weighed (6.22 kgs), dressings changed, meds altered due to him have a urinary tract infection in his left kidney and we returned home happy.... then his slightly niggly cough quickly worsened in the early hours of this morning. By sun-up he was wheezy, coughing constantly but not really clearing it. He didn't have a temperature but was grizzly and his breathing was a bit more laboured. We checked with our 'Action Sheet', which was prepared for us to know exactly what to do in various scenarios. So after watching him for a few hours, increasing his oxygen as he was de-saturating slightly, we rang the ward and then went into to CED (Children's Emergency Department). They were expecting us and we have a covering letter that basically says check Sam out quickly and contact the gastro team consultant..... so it was all smooth and he was triaged and before we knew it we were waiting in a single room waiting for the ward to sort out a room.

It seems Samuel has bronchiolitis which is viral and is inflammation of the airways. There isn't much medically that is offered for this, but as Sam is vulnerable with his poor underlying condition they readmitted him to the ward to monitor him especially over the next 48 hours or so when kids typically deteriorate. Treatment tends to be offering respiratory assistance as needed, as opposed to treated with drugs.

So I'm writing this having left Francis with Samuel in CED, returned home to have dinner with the girls and spend time with them and Grandma..... Mum arrived up yesterday and I've got her busy washing dishes and sewing costumes for the girls for their Fancy Dress parade at school on Friday - hooray for a Mum that can sew! The girls are a bit unsettled having our nice routine messed around but we had some important time together and got them settled into bed before returning to hospital with a few forgotten supplies. Samuel was settled and sleeping when I saw him, having had some paracetemol.

I thought I'd be really disappointed when we had to head back for a hospital stay, but actually I'm relieved. After watching him over night and then deteriorating this morning I didn't want another anxious night of 'should we take him in or not'..... it's reassuring to know we made the right call to take him in and that if his breathing does worsen he's right there ready for treatment if necessary.

The good news is that the blood tests he had yesterday showed that his biliruben has dropped into the mid 80s and other indicators have improved too. So although it's a setback for Sam having bronchiolitis, other indicators are positive.... so we grasp at the good bits we can! I did say in an earlier blog that I'd be dancing on the table when we broke double figures.... well I forgot that our table has been kindly loaned to us and they want it back, preferable unbroken! So trust me when I say I'm doing a jig right now by the computer.... see... there, done it - no need for broken wood to prove it! Woohoo!

Tomorrow they plan to take a sample of his mucousy cough/goo to send to the lab to try and pin point the exact virus.

It is sad to see our little front room empty and to go to bed without him here. It's been so fabulous. This morning Candace raced in and helped me bed bath Samuel and Jasmine had a lovely cuddle with him before school.... so I feel a bit severed again and sad for the girls... but peaceful that he's in the right place for him.

Sleep well. X Shirley