Christmas preparations

We had a thanksgiving meal last Friday (once we'd persuaded Lily it was more important than watching Shortland Street and making her leave her flat)and then started the Christmas decorating. It coincided with Hannah moving out into a flat so was very hectic. Bot now we have a relatively tidy and quiet house decorated for Christmas. Isaac is by our teddy bear Christmas tree that stands in the hall and Noah got to turn on the outside lights for the first time last night as it was December 1st (it doesn't get dark enough until nine o'clock in this NZ summer).

All eight kids will be here (along with four partners) for our Christmas meal this year, we will eat early evening, so Sam and Anika and Hannah and Thomas can spend lunch with their other families and Beth and James other family aren't having their celebration till Boxing Day when James' brother returns from Japan.

Noah finishes school on Thursday and has already had the graduation ceremony for his special needs unit. Isaac and I attended but Noah didn't - or at least he was the other side of a locked door into the gym, hidden away in the foyer. When I arrived his teacher said he had run off and as this is a fairly regular occurrence we decided to wait for him to turn up again. After an hour, the ceremony was in full swing but I was really worried, came home to see if he was there and was then ready to call the police. Finally a teacher aide and the school secretary found him sitting quietly in the unused foyer a bit sad that he had heard them singing but hadn't been able to take part in the song he'd practised but otherwise Ok. It still adds wrinkles to my face with each disappearing act though!

School holidays

The boys have just gone back to school but we now have a long w/e. We drove to  
Gisborne accompanying Paul to his clinic there and on Isaac's seventh birthday it was so warm we spent some time on the beach. At first Isaac just sat cross legged on the sand but eventually enjoyed splashing in the water while Noah spent over an hour burying sticks. We even got Paul on the beach after his clinic!

Miserable, full of cold, kids

My study is not going well this week as Hannah, Noah and Isaac are all sick. I have finally got Noah back to school today after three days off - we could tell he was recovering when we found him trying to open the bonnet of the car with some wires in the other hand! Isaac however is at the stage where he doesn't want me out of his sight but everything I do is wrong. He just asked for an ice-cream then immediately threw it on the floor, an improvement on yesterday I suppose, when I had to fight hard to get a grand total of just 250ml fluid in.
Paul is missing the fun by having three days away so this meant Isaac slept with me last night. "Slept" not altogether accurate, but I did get 4 hours of sleep in a row from 9.30 to 1.30.
Hannah is a bit sorry to be missing time from her social work placement in child protection but she only emerges from bed for a little while then goes back to sleep again. She has to get a doctor's certificate this afternoon, so hopefully they can decide whether or not she has a bacterial sinusitis following her viral infection.
Counting down the hours for Paul to be back (tonight) so I can sleep in Lily's empty bed downstairs, maybe take a walk by myself and have a little bit of quiet time to do some study. Then I'm assuming that over the w/e Paul and I'll get sick with the bug!

long overdue update

We had a great trip, just Paul an dI and Noah. Three nights in Singapore, overlooking the beach of Sentosa Island, going to the small 'Universal Studios" they have there. I was brave enough to go on the transformers ride and probably enjoyed it more than Noah, although he went on the very scary cyclon roller coaster which I didn't dare do. We had a lovely time in UK in spite of the weather (I kept saying it was no better than NZs winter only to return here and find that in fact it was much colder here!). We were so impressed with Liverpool (where Paul had a conference) it was just beautiful and Noah and I went on a "ferry cross the mersey" and raced round a wallace and Grommit in space exhibition - it said allow two hours but we'd finished in 40 minutes - the best bit being that we had the whole Wallace and Grommit gallery to ourselves as we were by far the first to reach it! Noah managed to set off a fire alarm at the Beatles exhibition by escaping through a fire exit and being with him all the time we saw just how impulsive and difficult his behaviors can be. It meant that once we were back we were happy to start him on the clonidine his new paediatrician suggested. This seems to be making a big difference - occasionally now if I ask Noah to do somethign he says "sure" rather than an immediate "no".
It was good seeing the parents again, and my sister and family as their holiday from NZ to Europe happened to coincide with ours.
It was a long flight back, especially as the radar broke down in Munich just as we were in a full plane about to begin a 12hour flight. We sat for over 3 hours on the plane before taking off, but luckily had a long stop over in Singapore with a good sleep in the transit hotel. It was lovely that Joe and Rachel met us at Auckland airport as we had over 3 hours there.
So now we're back to some kind of routine, The boys are in school and I am studying to take a medical multiple choice exam in Feb - the first step to registering as a doctor again.
Lily is lovign flatting. She rarely even wants to vist us now and had a very successful flat warming party last w/e.

life continues

I have just finished one of my massey exams, next one on Tues then I've finished my course!

Two days afterwards it's off to UK for Paul, Noah and I, having the holiday we missed over Xmas celebrating birthdays for Noah and me and attending a conference in Liverpool for Paul. Hannah is looking after Isaac her in NZ she volunteered after I foolishly said "It would be easier just to pay Isaac's fare to someone in NZ for caring for him rather than take him"
Lily seems to be enjoying flatting. They have a strict routine with menus and chores on a white board and she has someone to remind her to have showers etc. I worry about her getting cold but luckily the flat is well insulated and she sometimes remembers to wear a jumper!
Noah's school behaviour is a bit 'off' again. I got a phone call from his teacher who I think was trying to threaten him with "I'll phone your mum" and then had to follow through. Hopefully it's just because we're near the end of term and it will improve with some concentrated attention from Paul and I while on holiday.

Lily is going flatting

This Saturday Lily will start flatting with two friends who also have Down syndrome. She has no concerns at all in spite of being unable to remember the address of the house! (we are working hard on that) Paul and I have many concerns, but luckily the organisation that will support them is very helpful and keen to hear our ideas.
They will have helpers in from 7.00 to 8.30 am and 4.30 to 7.00 pm on Monday to Friday and a bit less at the w/e.
I said Lily could choose her own bedding for the first time (at the moment she has to have stuff I consider matches our colonial style house) so with her beautiful antique style sleigh bed she will have a black duvet cover and pillow case with pirates and skulls on it!!

Also this w/e Hannah and I are going to Sydney to visit Beth , James, Sam and Anika, leaving Paul with the boys. This was arranged before we knew the flatting dates and Paul is not best pleased!

Everyone is doing well. Noah has an IEP and I knew they truly understood him when for his goal of reading and understanding his time table they said "partially achieved" he can read the time table, but does not always choose to obey it!!

school holidays

We are now reaching the end of a relaxing two weeks of holiday. The two boys and I accompanied Paul to his two day clinic in New Plymouth and even though I was initialled concerned about how we would fill the time between needing to leave the motel at 10am and Paul's clinic finishing at 3pm we coped well, spending well over half an hour at the tourist information place where Noah played on the interactive map and Isaac watched the 12 screen TV. We also went to see the Lorax at the movies and Isaac behaved relatively well and was luckily surrounded by many young children not behaving much better. I said I would practice driving on the way back and drove from Egmont village to Inglewood (possibly 2% of the journey) not exactly sharing the driving! In Inglewood a lady opened the toy museum for us that was supposed to have closed (this is why I like NZ) very interestign to see how they made lead model cars in atiny cottage industry based on the toys the owners kids liked.
Back to school tomorrow and I am hoping I cleared out Isaac's lunch box at the end of last term and will not find it going mouldy in his school bag tomorrow morning!

further relaxation

You can tell life is more uneventful as yesterday I wanted to wear my favourite T-shirt (pink with 'it's a small world' logo from Disneyland) and I took it out the packed hospital bag! At the same time I took out Noah's two pairs of pyjamas, one of which was bought specially for his last hospital trip. I think the new definition of whether or not a child has a significant medical condition should be whether or not parents have a packed hospital bag ready to go!
I have two Massey assignments to do over the holidays, one is a task based job analysis of Paul's work (I chose him as he is the only person in full time employment I know well enough to interview) this is quite hard as a lot of the tasks he does as a consulatant are 'thinking' or 'adapting' so hard to describe. I also have to do a literature review for somethign that's been in the news and is related to abnormal psychology. I decded to choose PANDAS (those of you who know me from long back will remember the PANDAS project of 2000 when I was involved in trying to get a Palmerston North development assessment and support centre for preschoolers with special needs, so I thought the title was apt) paediatric autoimmune neuropsychiatric disorder related to group A streptococcus, this should hopefully up my medical knowledge of immunology and microbiology too. Its an interestign disorder (if it really exists) where after a throat infection children develop sudden onset OCD and tics. I am pulling out news reports from New York where multiple teenagers in one school developed tics and some parents insisted it was PANDAS not mass hysteria and got Erin Brokovitch in to look for toxins (presumably not related to sore throat).

Happy Easter

Although I hardly dare say it life has been fairly peaceful and uneventful (and long may it continue). The Massey uni break coincides with the boys Easter break from school and Paul has been off all four days of the Easter holiday, we went to see the Dr Seuss art exhibition on Saturday and today we went for a long walk - Isaac walked a lot of it and is now absolutely exhausted.

Easter itself seemed very quiet as we had no extra family members here - Sam and Anika have now moved to Sydney where they will be flatting with Beth and James. They have just found a lovely house to share. Hannah and I are going to visit at the beginning of June and are already quite excited.

Isaac is suddenly making progress with his speech which is amazing after so many years of plateauing - he tries to copy everything we say (especially whatever Noah does or says). In the esplanade today he repeated the same word four times until I eventually understood he could hear the little train and was saying 'train'.

Noah is trying to write a bit which is also good as he used to hate even holding a pencil. He came to ask Paul how to spell a word as he was writing down the names of some of Lily's songs. I heard Paul first spell 'birthday' then when Noah said that was wrong 'version' finally Noah told us it was a song by Madonna - I think I'd prefer him to sing"like a birthday' than"Like a virgin"!

Salami warning

Being in New Zealand , the kids learn at school what to do in event of a volcano eruption, earthquake or tsunami. It tickled us though when Noah came home from school yesterday and told us he had been taught what to do if there is a 'salami'!

World Down Syndrome Day party

March 21st is World DS day - the 21st day of the third moth standing for the 3 copies of chromosome 21. It is also the anniversary of Paul and I getting engaged, Paul very romantically chose the first day of spring (as it is in the northern hemisphere) as he liked the song "If I ruled the world every day would be the first day of spring." We got engaged 34 years ago.
Yesterday the zone 21 youth group here put on a party for all the families who have a child with DS in Palmerston. People had to wear orange and purple which are the colours of the NZDSA. It started at 6pm and Noah and Isaac lasted over an hour before Isaac nearly fell asleep and Noah's behaviour deteriorated and he punched Hannah.
We can tell things are returning to normal by the way Noah is no longer so well behaved - I think when he was sick he was really quite afraid and felt the need to behave so we would look after him (and perhaps didn't have the energy for many exploits).
He is back to saying (or shouting) "NO" to those demands which mean a quick change of activity or leaving his Ipad, and got into trouble at school for being uncooperative like this to his drama teacher - he had just returned from an out-patient visit and abdominal X-Ray so his was pretty disrupted with presumably a few bad memories.
Obviously the whole time of being sick has had a major impact on him and the other day when Lily said she had nightmares about were-wolves Noah said "I had a nightmare that my stoma had come out and wouldn't go back in". He often asks where 'Oswald and Epic' (his pet names for his stomas) are now. I told him they are back inside where they belong and he said "Does that mean I am pregnant with Epic and Oswald?"
He was also obviously a bit upset about his rectal prolapse and tells us to be careful when we do his washouts, he is scared to push very hard when on the toilet now in case 'the phantom blot' reappears - you need to know the wii game 'Epic Mickey' to understand his naming of his prolapses!

suitable birthday gift for Lily's friend

When we were in Wellington hospital and soon afterwards we were not monitoring Lily's money and were shocked to discover that in one weekend she had taken out $240 on Friday, Saturday and Monday and could only account for about $200 of the $720. She may have left money in the machine, given it to a beggar or her friends or dropped it but she just has no idea. Anyway since then we have been tightly monitoring her money so I was involved in getting a birthday present for her friend - a guy with DS turning 23. I asked her what she thought he'd like - when it became apparent that she had no idea of his favourite foods or music (even though she spends each Monday afternoon with him) In the end I asked her what she thought he liked doing as we could get him something related to that. After some thought she said we could maybe buy him a magazine of naked ladies as he keeps one in his bedroom and loves to look at it!
I did consider this but got a T-shirt instead!

a week with Rachel

Rachel is trying to sort out her newly independent life following her break-up with Adam her partner of 6 years. She has been living in Auckland with Adam's mum while Adam lives in Queenstown but this is obviously not sustainable. This week she managed to get a lift to Palmy to spend the week with us. It was not a good start when the hidden key I'd told her about was not there and she had to sit in the garden for 2 hours before anyone came home!!
Anyway we had a nice week and especially enjoyed this natural technique she has of keeping a tidy house around her and all her help with the boys. She let Noah use her lap top a bit until he tried to trace the route all the way from Palmerston to Auckland on Google street view!
Rachel did train as a nanny so she is vaguely wondering about a live-in nanny job in Auckland or UK, but she also has some interviews for receptionist jobs.
Paul had a busy week with Wednesday in Hawera, Thursday in Christchurch and Friday in Sydney. He managed to do Sydney and back in a day - leave Christchurch airport at 7am and get back to Auckland at midnight - and his meeting there was just at an airport hotel so he did not get to see Beth.
However Beth will be in Auckland next weekend as she is being the sponsor (not sure if that's the right word) when her friend Gracie is admitted to the bar. Hopefully Joe, Sam< Beth and Rachel will all meet up and celebrate Joe's 30th birthday which was on Friday. We can;t go as Hannah is bridesmaid at another wedding which we've all been invited to.
Noah is doing pretty well, although we should possible take out shares in 'pull-ups' and 'brolly-sheets' - one of my least pleasant experiences of the week was sniffing a brolly sheet to see is it belonged on the clean or dirty washing pile! He has an outpatient surgery appointment and X-Ray booked in Palmy this week and I thought we'd go if only so that news of his Wellington surgery gets documented in his Palmy notes.
Paul wants me to write that he has launched a medical app which made it to the top ten charts for apple medical apps in certain countries (for example having two downloads in Ecuador puts you in the top ten there). It is free and about dosing dabigitran so I have no idea why any readers of my blog would be interested!! but the link is here. He had a letter published in the New England Journal of Medicine and some of the follow up to that mentioned his app so he has now had over a thousand downloads.
Joe is not that impressed as his games just click red and goo up are bringing him in some money as opposed to fame.

relaxing but a hiccup

Noah has finally got back to school and I have had two lectures at Massey and can feel my stress levels dropping (and the eczema on my legs slowly healing).
I had to give the school quite a lot of instructions about Noah's toileting including the fact that he gets a severe 'nappy rash like' skin condition if not carefully wiped with wet wipes and having thick cream applied (thanks Beth for sending all the calmoseptine cream you found in Sydney as it's not available in NZ) I wonder what the regulations are about having teacher aides go this close to a child's butt - I'm sure it wouldn't be allowed in UK and I am pleased we no longer have to discuss behaviour like this with social workers as we have allowed our foster care approval to lapse.
I felt relaxed enough that I decided to finalise arrangements for the holiday we had booked even before any of this happened in December - Paul is going to a conference in Liverpool and as this coincides with Noah's 13th birthday and the end of exams for me we decided to accompany him and then go on to see relatives in North Wales. Hannah will look after Isaac for us in NZ.
We have now booked the Rasa Sentosa resort for 3 days on the way out, Staybridge suites in Liverpool for the conference and the beach house in Prestatyn from 30th June to July 6th when we fly back to NZ.

Should have known this was a little overoptimistic for no sooner had cheques been written and credit card details posted then Noah had a prolapsed rectum.
Paul was giving him a bowel washout (330ml saline as an enema) and as Noah then sat on the toilet he said "Oswald is back" _Oswald was the naughty prolapsing ileostomy stoma.
About 6cm of rectum had prolapsed which Paul was luckily able to easily reduce, but we will now have to email the surgeon again and presumably avoid enemas. At least we know the botox will wear off with time and not allow his rectum to just drop out!

I am not looking forward to having to tell his teacher aides about this issue they may have!

Recovery and moan about hospital experience

Noah seems to be almost back to normal - just a little more pale and tired than usual. I am shattered though and have just one weekend to recover before Massey term starts.
I can only describe the hospital experience as being on a never ending long international flight - that whole feeling of inadequate sleep, not knowing what time of day it is and eating snack food at odd intervals.
The first three nights we were on the six bedded ward so shared the germs of at least 20 people (patients and carers with a very quick turnover) by the second day we were the longest stayers on that ward - I think that is where I picked up a cold that I didn't have any time to nurse - still the dry air in the hospital stopped my nose running.
In this bit of the ward had to change Noah's ileostomy bags on his bed (as the treatment room was usually busy) without easy access to water - only one sink on the unit and not by our bed- and without the help of any nurses who I think knew nothing about ileostomies (because the more experienced nurses were with the monitored children). We then had to walk him quiet a long way to the children's toilets each time we wanted to empty the bags and this included three times over night once he was on bowel prep
They were so pressed for beds as two wards were combined into one that they were suggesting pre-op kids and those with broken arms go home overnight then return at 8am. Those without drips or monitors slept in the outpatient day ward and returned to the ward during the day.
One advantage of Noah having fentanyl post-op was that he needed a monitor so we got a single room opposite the nurses station. We had a few nurses pop in the first night as they turned his monitor outwards so all the nurses going past could see it and his respiratory rate dropped to 9 and pulse to 59 his oxygen sats stayed in the 90s though - I think they were grateful when he was weaned from the fentanyl. The anaesthetist had also put in a spinal block which lasted about 24hours and stopped the pain from his extremely bruised anus - it was painful just to look at!
While we welcomed the nurses interventions over the first few night it became an intrusion on the final night when Noah was woken at 1am to be given panadol and then I was woken from my pretend sleep "Noah's mum" (you don't have a name in hospital) "How do we get him to take his panadol?"
He was woken again at 6am as this is the time they take the daily temperature.
The nurses were so so busy, it was really only on one quiet day that they had any time to spend just chatting and then it was obvious they hated the two wards in one as much as the parents did.
I have to say we have not usually had such a bad experience in Wellington and that it wasn't helped by the horrible half-way house type hostel that we had to sleep in while Ronald McDonald house was being rebuilt.
It was much better when we decided to pay for a motel (on the days it had spare rooms) as we hadn't been away on holiday this year anyway. Then whoever had slept on the ward could come back there for a shower and breakfast while the other more awake one went over to the ward for the early morning ward round.
Staying on Palmerston North children's ward now seems positively luxurious in comparison to Wellington.
In spite of my moans - getting Noah well was what we wanted and we seem to be there for now.

We are home!

Absolutely exhausted - Paul and I even more so than Noah, but so grateful to be home.
No ileostomy, just a blue dressing with no idea whats underneath - the nurses have no idea either but just said don't take the dressing off yet - will it be staples, stitches or dissolvable stiches?
We did however take off the cling-film like wrap that has been on Noah's scrotum and the three stickers for the heart monitor that the nurses said they like to leave on until the patient goes home as the patinet may complain when they're removed.
They were right about the complaining - Noah is doing plenty of screaming at us and everythign which is one way of telling he's gettign better.
This morning he lay in his hospital bed shouting "I hate the world" he threw his shoes, the pillows and shouted at me to get out then to come back.
He made a very fast recovery yesterday, from lunchtime still having nasogastric aspirates and needing fentanyl (an opiate) for pain to the evening drinking 4 boxes of flavoured milk and walking upstairs to the Ronald McDonald family room then back down the fire escape. He had had no exercise or food for a week yet just bounced back.
We have him wearign pull-ups all the time but he has mostly got to the toilet on time. Although running back from X-ray this afternoon was perhaps not a good idea and then realising the X-Ray technician had tied up the waistband of his board shorts which he coudln't undo made the mess even worse.
Still we are now the proud possesors of many varied ways of washing out a child's rectum (and will have a legitamate use of the drip stand we still have around from Isaac's tube feedign days to hold teh enema mix) so hopefully can get bowel issues sorted in time.
I think the next few days will show us just what levels of exhaustion adn stress we hav ebeen under, but at least Paul still has 2 days of holiday to go.

Noah getting better

Today Noah managed to walk to the toilet and walk down the ward to see his old room. He also had an ice-block. I can tell he is getting better, he got very frustrated with the iPad and had a bit of a tantrum about his NG tube up his nose.
"I hate this tube, take it out today. Aahgaah etc etc. ".
Hopefully it will be taken out tomorrow.

On the positive side. I had a great sleep last night!!

Day 2 post op

Noah is doing well. He had a bit of pain overnight and needed more Fentanyl, but he is quite lively this morning. No pain and no nausea. He has still got a few tubes and wires. Hopefully some can be removed today.
His parents on the other hand are a bit exhausted. Probably had enough of hospital. From tonight we have a motel room with a kingside bed and hot shower. My turn (Paul ) to sleep there tonight. Can't wait

Noah after surgery

Out of surgery

Noah has come back from surgery. All went well. His stoma had been repaired. He is still very sleepy and has several tubes. The fentanyl seems to be a good pain killer. Noah tried to sing to us. As he has to be monitored a bit more we now have a single room!

A bad camping trip

Angela is sleeping in a motel after a night on the ward. It is my turn to have a night camping at the Wellington Hospital Childrens ward Campsite (very few stars). I have the corner plot in a 6 bedded ward. 6 children and 6 parents in one room. Main past- time is trying to workout what all the other children have wrong with them. There are a couple of fractures and one or two are really sick. There is a lot of background noise; the combined noise of several TVs on different channels, a few children playing, interspersed with alarming pumps and the nurses call bell. Somebody is on a cell phone happy to share their rather personal conversation with everybody else. The camping facilities are rather basic. Water is available but it is a bit of a hike and there is not kettle. There is only one toilet on the ward for the use of parents. It is right at the other end of the ward. I know I will have to creep down there in the middle of the night.
The so called bed for parents is not what I am used to. It is not a king single, more like a "Twiggy" single. Ok if you don't try to turn over. The mattress is slightly thicker than a blanket. The base is sprung. I know this as I can feel most of the springs through the mattress.

The staff seem rather busy. I guess they are meant to be looking after the campers but we haven't seen much of them. They turn up occasionally and press a few buttons on Noah's pump. I suppose I got some help when I messed up Noah's bed changing his ileostomy bag. I said Noah's bed needed changing and the nurse gave me a pile of bedding and left me to it. Never really got the hang of 'Hospital corners'

Fortunately Noah is doing well. He has coped with a lot and is ready for surgery tomorrow. Hopefully he will improve quickly and we will be able to leave the camp site soon.

Good night and happy camping.

Paul

Here at the hospital- by Hannah

This is Hannah

We're here in Wellington hospital.

After arriving with mum concerned we were 15 minutes we found out the hospital wasn't actually expecting us until Friday.

I took Isaac for an explore around the hospital, and when we got back noah had a bed - he is in a room with 5other beds, but lucky us because we have a small TV with a DVD player, and a large window with a windowsill useful for storage.

Me and dad then went to enquire about Ronald McDonald house, as the hospital wasn't expecting us neither was Ronald McDonald.

We had a bit of a treck up a dingy staircase only to find there was no reception there and we needed to go back across the road to the office.

We asked if they knew we were coming - and they didn't - they managed to find a single bedded room - which I politely pointed out would not be suitable for me

And mum to share - they then managed to shuffle around some people and found us a double bed .

After seeing the room (and the size of the bed) we thought we'd check out the motel Down the road.

There were pretty booked but found us a room for the night (me and mum shared a king bed) which was LOVELY, and hopefully they find more rooms for us another night.

Me and isaac are sharing Ronal McDonald house bed tonight, while mum sleeps on the ward.

I'll keep you posted on how that goes.

Wellington hospital - here we come

We made Noah a special cake for tea (when mixed with ice-cream this counts as part of a soft diet) saying goodbye epic and Oswald (the pet names for his stomas). Oswald has been putting up quite a fight today, on three occasions only able to be reduced by first covering it with a bag of frozen peas.

I was dreading ending up in hospital here and causing Wellington surgery to be delayed, but it looks like we're all set to go tomorrow morning.
We will try to keep the blog updated through Paul's IPhone but will probably not often have Internet access.

naughtiness from the sick bed

The novelty of enforced rest and a soft diet has long since worn off for Noah and it is a battle of wills to keep him still. This morning he was downstairs about to tuck into an enormous jam sandwich when Paul got up. He refuses so much food that he basically is only eating scrambled eggs, tinned spaghetti, chocolate and ice-cream on this soft food diet. He also has been closely watching me on the IPad and worked out our password for the app store. Paul suddenly noticed all these new apps appearing on his IPhone (the two IPads and the IPhone are linked together) Noah was playing on one of the pretty picture apps (heatpad I think) and saw an advertisement for all the other apps they make and bought them all! He then searched maps and I was really concerned that he would have downloaded some really expensive GPS system but luckily in total he only spent about $20.
Just now he got hold of my IPad while I was making lunch and he pressed buy now for a text book I was looking at on trade me.
I will have to cut this entry short now as he is in the front garden with the water blaster.

school at home

A teacher aide and fellow student from Noah's school have just come to visit him and sit with him for an hour or two, giving me chance to update the blog. It is so kind of them and of my friend Karen who came yesterday and sat and chatted with me in Noah's bedroom.
Noah is trying hard but he really needs someone with him all the time in order to stay lying down. Lily sat with him yesterday but she became so engrossed in the movie they were watching that she didn't notice him creep out of bed and downstairs!
With the enforced rest and the soft diet we are doing better with the prolapse - I only needed to reduce it about four times yesterday and it was never far out or changing colour.
Noah is quite enjoying the soft diet as it includes a lot of chocolate and ice-cream. He is also having quite a lot of scrambled eggs which I hope will build him up a bit before surgery. He had a bowl of tinned spaghetti for tea yesterday and Lily sat upstairs with him having spaghetti on toast.
I've decided the rest of us ought to have the opposite of a "soft" diet in preparation for the days of very poor diet ahead - so we are having lots of vegetables and salad.
Hannah has managed to get Tuesday and Wednesday off next week so will be able to come down to Wellington with us, this is especially kind of her as it means not being with her boyfriend Thomas on Valentines day. The surgeons secretary phoned and is trying to do the paper work so we have a bed waiting at 2om on ward 19 and she faxed some stuff to Palmy hospital so the relevant person here can try to book a space at Ronald McDonald House for us. I spoke to both these people - in one case this involved having to phone the hospital and ask for Elaine, as there was no surname or phone number known! still I got put through to the right person.
The actual Ronald McDonald House is currently being renovated so is shut so I hope the alternative accommodation is not too far away.
I will soon start my favourite pastime of writing lists and we'll hopefully not forget any essentials for our weeks stay.

surgeon's plan

We have a plan. This has reduced my stress levels at least somewhat.
We had forgotten what surgeons are like, so our idea that we might have a long conversation weighing up lots of options did not happen. Instead the surgeon came in said "Happy New Year, what did the x-rays show?" We showed him our print out of the barium enema and a photo of the prolapsed stoma and he said Noah needs to come in for my next list to reverse his ileostomy and have "a bucket full of botox in his anus".
Basically he says the very dilated bowel is not the worst he's seen and that so long as the anus is no longer tight we can keep it empty with daily enemas or washouts. Check this link for a full description and imagine how Noah (and us!)will enjoy this even though it is a lot less dangerous than our present situation.
The surgeon has his lists (operates) on Friday and Noah needs three days of bowel prep. So we need to go in next Tuesday for full bowel prep and washout which will need a drip to replace the fluids he loses. He will probably be in for 5 days or so after Friday's surgery.
We are tryign to arrange that Hannah and Isaac, Paul Noah and I will go down on Tuesday and get a room in Ronald McDonald house (on a temporary site at the moment) Paul will sleep on the ward that night then fly directly from Wellington to New Plymouth to do his clinic there on Wednesday and Thursday. That means he'll be back for the surgery on Friday when he'll take a weeks holiday (0r maybe even ask for compassionate leave) and Hannah will be able to get a bus back to Palmy wheever she wants from then on leavign Isaac
So we now have to try to keep Noah lying absolutely flat for 6 days, or as the surgeon says you can take him in for the bowel to be reduced in Palmerston North if need be before that - they can cut a bigger hole so it can be reduced but don;t let them remove any bowel!
Unfortunately Paul has to do a clinic in Gisborne tomorrow and Friday leaving me to manage alone and after the extra movement and sitting up Noah has done today the stoma is very unstable and keeps protruding about 8 cm and going purple and being hard to reduce. When it goes in the other bit of bowel (the good stoma) pinks up and starts producing loads of gas. We are on a real knife edge but will now treat Noah as a total invalid and give him a"soft, light, non-gassy diet" - surgeons instructions.
We are trying to think up ways of keeping Noah still - wearing pyjamas is one, watching new DVDs in bed, having Paul give him a present on return from Gisborne if Noah has not been downstairs. I'd be grateful for any other suggestions.
Please keep us in your prayers over these next few difficult days - I am really not sure we will make it without visiting ED in Palmerston.

barium enema

As with all hospital stuff, for his barium enema Noah got cold feet at the last minute. On the drive there he kept saying "turn left here and go back home, don't go to the hospital". He was alright for the waiting then getting on the table but when asked to turn onto his side he just lost it completely and started fighting. We ended up calling Paul out of clinic and with a bit of holding him down they finally got the catheter into his butt. Then Noah quietened down and even apologised to the doctor and technician (who we know as he is Beth's brother-in-law) for fighting!
The X-Ray unfortunately showed loads of dilated bowel and rectal pouch and in spite of having 300ml of barium in his rectum Noah had no feeling of needing to pooh, all of which is abnormal, although as the radiologist said they don't have much to compare him with!!
We'll see what the paediatric surgeon has to say tomorrow but this does not look like it will be a quick fix situation.

waiting weekend

This has been a very subdued weekend trying to keep Noah quiet. We managed to have a pooh story not related to Noah when I FORGOT to put a nappy on Isaac (shows how stress affects silly little things) and the inevitable happened!!

We did get out to have a gelato at our favourite restaurant so Noah has at least left the house. We had been doing "things starting with G" for home school - a stretch of the hospital theme we're following - as Noah was in room G at the hospital. So Noah had to read us his library book about gelato and the reward was going out. Oswald the stoma keeps coming out so we are collecting more and more DVDs and IPad apps to keep Noah lying down flat as much a s possible.

This is a photo of Noah's stoma as I've realised I hadn't posted one before.

barium enema

We were delighted to get an email from the paediatric surgeon in Wellington saying he wanted to see us as soon as possible. He suggested Monday but it is the Waitangi day holiday and he has surgery on Tuesday so we are hoping for Wednesday. He said a barium enema would be the first investigation he needs to see and we were very impressed when the surgical registrar here managed to book one In Palmerston North for Tuesday afternoon so we can take the films down with us. Noah has to be on only clear fluids for 24hours prior - which seems a bit nonsensical as the barium enema is of a redundant bit of bowel that won't see any of his food! - however we are so pleased to be booked in that we won't quibble.
Trying to explain the process to Noah is quite fun so now he's saying "a drip up my butt" which is as good an explanation as any!
For his home school we have let him dictate his story to us in his own words - quite interesting to get his perspective eg "my tummy was hurting for ever" "the doctor said oh-oh, we have a problem, there's a hole in your bowel" "mum and dad talked and talked to the doctors" "I saw two big lights in the operating theatre"
Paul had the day off yesterday as we had some guests from Canada who are interested in inr online (Paul's internet business) it ended up that they couldn't get here till late afternoon but meant that I got out of the house for a few hours while Paul looked after Noah. We are very poor company at the moment and instead of showing them around Palmerston North today Paul has had to go to work and I have to stay here with Noah. We even had to leave them half way through yesterdays evening meal to reduce a nasty stoma prolapse and after breakfast this morning Noah's bag leaked so I had to put him in the bath and change it . Tonight they are taking Paul and I out for a meal so the plan is to have Noah lying flat in his bed watching a DVD with no prolapse leaving Hannah with instruction to call us if there are any problems.

shortest school trial ever!

I had hoped originally that Noah would return to school full-time with staff able to easily manage his ileostomy so that I could sit around at home drinking coffee or go gallivanting around having a great time (or just get on with ordinary life including massey study) - this was always a bit of a fairy tale but it's good to have dreams.
Anyway with the trouble we're having with the prolapsing full-time was obviously not an option so I kept the date with the teacher on Monday to explain things taking Noah along and we talked about him maybe doing two hours a day between 11.30 and 1.30 thus avoiding playtimes, mainstream rush around time and PE sessions. However the faces of the teacher aides really said it all when we discussed emptying bags and showed the photo explanation of bag changes. This is where we were back in December so can't blame them. Two of the least squeamish teacher aides said they would do bag emptying but would call me for anything else.
This uneasy situation soon resolved itself though because as we left the school grounds (about 200m walk from our home) Noah said his stoma was hurting and by the time we got home it had prolapsed quite a lot and was quite hard to reduce.
This meant he was obviously not going to cope with any moving around and needed to stay invalid like at home so I phoned the school next mornign to wsay he would not be coming in after all.
Yesterday he did quite well during the day - moving very little and cooperating slightly with my attempts at home-schooling. But just as we were to leave for a BBQ! for our home group the stoma popped out and became quite purple and oedematous. Paul managed to reduce it and we went (perhaps not a good idea but we want some semblance of normal life) to the BBQ. While there it came out three times needing frozen peas to reduce it the final time and leaving a bag full of blood and mucous). Once he was in bed lying flat and then asleep it was fine - although we were not quite so fine and checked it a few times!
Today we are working on keeping Noah almost completely quiet - I've told him he's in hospital but at home so musn't move much and Paul is going to talk to the surgeon and see if there is any way we can hurry things up in Wellington as obviously this situation is not sustainable.
Noah is pretty well in himself, although a bit subdued about the thought of needing to go back to hospital if we can't get the stoma in.
I had said to him we might order a special book just to keep in his hospital bag (we now have a ready packed bag for him and us!) and when I next looked at the computer the book had been ordered from amazon.co.uk by Noah (this is what happens when you have a one-click order system set up with amazon and forget to lock your computer) so we are now ordering the epic mickey photo book (an American book) from amazon.co.uk at twice the price it would have cost from amazon.com!! At least it shows Noah is still well!
Isaac was really pleased to be back at school and went roudn hugging everyone. At the moment he is tryign to copy almost everythign we say which is really sweet and it will be great if it ends with some understandable words he can use spontaneously.

quiet weekend

We have spent the weekend trying to keep Noah very quiet to avoid the reemergence of his prolapse. Noah's main stoma (the proximal one that works) is called "epic" as epic mickey is his favourite computer game and it is supposed to be helpful to name your stoma and think of it as a life-saving friend. Noah has now named the naughty stoma, that should not be there (the distal redundant bit of bowel that prolapsed) "Oswald" as this is the baddie in the epic mickey game. So we keep looking to see if Oswald has appeared (which is often) and then make Noah lie down so he disappears again.
I can see this is going to make school very difficult as now not only to we have to teach the staff how to empty and change bags but also when to be concerned and phone us or the hospital.
We are going to say we don't want Noah to do PE or swimming and tell the staff to have a very high index of suspicion and send him home if they have any concerns. This is not going to fit well with me going to Massey but luckily there are 4 weeks till my term starts so hopefully by then we'll have an idea of what's happening and I can decide whether or not I need to withdraw from my papers.
Noah is doing pretty well - I caught him carrying a chair upstairs - but other than that he is trying to be quiet. He is a little subdued - he used to often tell us he hated us but when we were in hospital said to me "I hate you and I love you mum" and when Paul came to get us in the afternoon he held hands with us both and said "I love my parents" He seems especially cute at the moment.

Noah surgery for prolapse

The stoma nurse put on a new kind of bag yesterday, much stickier and brown rather than transparent, unfortunately this meant that we didn't see how much Noah's stoma was prolapsing. It was also the day of resuming 'date nigth' for Paul and I so Hannah babaysat while Paul and I went out for a meal and to the movies and got back at 11pm to find Noah still awake, although not in pain.
He said he had emptied his bag three times durign the evening and it was red but it was not until I emptied it at midnight that I realised this was frank blood We decided we would have to take off the super sticky bag to have a look and when we did about 10cm of bowel was in the bag alongside his stoma and was a rather purple colour rather than the bright red it should be.
(I have a rather horrible photo of it from Pauls iphone)
We went to ED and then had about an hour to wait before being seen by the ED doctor ( frustrating because once bowel looses its blood supply its a real emergency) then the surgical registrar (luckily the one who had looked after Noah in December). He covered the prolapse with sugar and ice which made it look a little less purple but he could still not reduce it so woke up the consultant at 3am who came in to see. This then also meant waking up an anaesthetist. They hoped that anaesthesia would relax his abdominal muscles enough for the prolapse to be able to be reduced but if not we had to be prepared for major surgery with bowel resection, so Paul and I sat in the relatives waiting room for what seemed like ages until the surgeon returned and said with more sugar (this dehydrates the bowel wall making it smaller) and patience he had managed to get it back in.
Unfortunately it is almost inevitable it will prolapse again so Paul and I have to keep a close watch and try to reduce any prolapse at home if we can and if not may directly phone the registrars.
The only solution is to repair the ileostomy and this can only be done once the pediatric surgeons have decided what was causing the chronically dilated bowel (found at Decembers surgery)and sorted that. (Roll on surgeon's return from Holidays on Feb 7th) Still it means we can take the next few weeks as a 'hospital in the home' type time and not feel guilty if we are worried about Noah.
A whole night without sleep - a very long while since we did that! got to ED at 1.20 am to the recovery room at 6.30am and then Paul came home to crash while I accompanied Noah to the ward at 8am and got a few hours very disturbed sleep around ward rounds and visits from the stoma nurse etc. We are very grateful for those staff who helped us in the middle of the night and pleased that Noah has bounced back and was able to be discharged home at 3pm to wish Hannah a happy birthday - we are proud of Hannah who was supposed to be spending the day with us all in Greytown but instead drove back here at 1am to babysit until this afternoon.
so Happy 5th wedding anniversary Sam and Anika and Happy Birthday Hannah, Noah has now given you another reason to remember the date!

I love the washing machine

photos from our New Plymouth trip and Charline and Scott's wedding where Hannah was

maid of honour

We managed our trip to New Plymouth but decided we are not brave enough to try out any other motels during this week of Paul's holiday. Noah slept sandwiched between two brolly sheets and the first night didn't leak at all (Paul changed his bag just before bed and we told him he had to sleep on his back) the second night the room stank but there looked to be just a small amount of leakage on the hotel sheets and we could put the brolly sheets in a plastic bag to wash at home.

On the journey home we stopped at a great museum place in Hawera (which presented a rather refreshing and different story of Maori history than I'd covered in my uni course) which included a boat ride rather likes the pirates of the Caribbean ride at Disneyland but without the queues, then we ate at the lovely gelato cafe in Hawera. However when we got to Wanganui Noah said "My bag's leaking" and indeed it was - it had almost fallen off - so Paul got to do something I had dreaded and changed Noah's bag in the disability toilet of Wanganui park. Noah luckily was very cooperative and just lay on the floor with his t-shirt as a pillow, however we didn't expect the bag to last long as it had not been put on with the usual care. So it was changed that night (3rd change of the day) for a small kids bag to give his rather sore skin at the edges a change to heal. At 3am Noah came in to say that bag was leaking and Paul changed the bag while I did the laundry - an absolute blow out that we would not have been able to cope with in a motel so thank goodness we were home. I love the washing machine and last night when the same thing happened I was all set up to do a total change of bedding and put the machine on in the middle of the night. We think now that he has a bit of a hernia of his stoma so it is bigger at night and then when he is asleep it reduces a little making the bag leak around the hole that the stoma now no longer neatly fits. We really wish we had a hospital appt before the end of February, it is difficult with his paediatrician leaving, the paediatric surgeon in Wellington being on holiday till Feb 6th and the adult surgeon having no real experience of kids ileostomies. I have looked up loads of websites and on the one from Great Ormond Street it says "Your child will need to be weighed and have their urinary sodium levels checked each week"- not much chance of that here.

I do not like living with such uncertainty, we have no idea what surgery lies ahead for Noah, but then I compare myself with others I know. especially my friend Bridget whose little boy Peter has relapsed leukaemia - she has lived with far worse uncertainty for years and coped with central lines, chemotherapy, anaesthetics, vomiting and diarrhoea nearly non-stop.

This makes it sound like life is only ileostomy though and its not - we went to the wedding of Hannah's friend Charline on Saturday - Hannah was a beautiful bridesmaid and Noah wore tight fitting trousers for the first time since his surgery. Paul and I had our first time out, going to the reception dance while Sarah (Noah's buddy) babysat.
We are spending this week while Paul is on holiday to try to finish the house (we have only been in it nearly 3 years now!) Noah has decided he would like his room decorated with a map theme so he has borrowed the beautiful globe that Beth gave Paul for Xmas and I have ordered some map posters from trade me and we have ordered some stickers for his wall one of which is a quote from one of his favourite doctor Seuss books and was the quote to Beth and James that Paul used to finish his wedding speech. It is very apt for our time ahead

"You're off to great places
Today is your day!

Your mountain is waiting.

So get on your way!"

out to play

Noah has made a full recovery from his vomiting bug and yesterday Noah went to play with his friend Harley after church- the first time he has been without either Paul or I since his surgery. It was so kind of Bev to invite him and as she is an experienced midwife she wasn't too concerned about dealing with his ileostomy.
Noah was so pleased and had a great time and although he needed a bag change first thing in the morning and another in the evening he was alright during his time at Harley's house.
We still need many bag changes and can never work out why certain bags stick for longer than others but each full day we go without a change gives me a chance to catch up with the laundry and I have another order for brolly sheets on its way so life should soon be easier. We use a brolly sheet as part of our bag changing kit for Noah to lie on and protect our bed and then at night we sleep him in a brolly sheet sandwich one on top and one below him (sometimes this even works and protects the duvet and under sheet!). i should probably write and thank the brolly sheet manufacturers!
Lets hope the run of easier management continues as this week Paul and I are going out twice - for a meal at a friends on Tuesday and to a wedding reception Saturday, and we are also accompanying Paul to his New Plymouth clinic on Wednesday and Thursday so will get some experience of managing the ileostomy away from home.

Noah headache vomiting

Life was on a fairly even keel, the novelty of school holidays and bag changes having worn off, so today Noah is adding some excitement by complaining of headache, he vomited at 4am and now won't eat and has just had sips of chocolate milkshake, I am not sure how much his ileostomy is draining either. So now he's lying in bed, won't take panadol and I have sent Hannah to buy some bubblegum flavour paedialyte in the hopes we can turn him around before we need to go to hospital. It is this decision making process of whether or not to involve someone else that I always find so hard. Paul is on his way to a clinic in Hawera - luckily a one day clinic only.
LATER
We ended up in the emergency department as Noah vomited again but once there he picked up a bit, drank two cups of water and had an xray which showed lots of air in the stomach but no dilated bowel, so we've been allowed home if we encourage drinking. He managed to vomit again just as Hannah pulled th e car up into the driveway but he seems happy now whereas I am absolutely exhausted and have a major pile of sheets to wash!

cool boy is alive

Noah must be much better, first he has become naughty again - running off and refusing to obey us in church today, and second he told us that cool boy Noah is alive - when he was post-op in hospital he said that 'cool boy Noah' was dead and he thought he would always be 'sick boy Noah'. This is real progress. We have also now had a total of 3 days when we have not needed to change his bag and this has allowed his skin to improve somewhat, this does mean that for the other 18 days he's been home he has had one or more bag changes whereas the bag should last for 3 days, but still we're pleased.
Noah has started taking more part in the care of his ileostomy, the other morning I said "We'd better empty your bag" and he said "I already have" - it had all gone down the toilet too! Today he pulled a little of the seal off himself, when Paul was changing the bag because of leaks.
It was good to go back to church today as it seemed like usual routine might be creeping back in and one day the ileostomy won't be my sole interest!

Noah loved Tintin

Noah really enjoyed the Tintin movie and there were no problems with his ileostomy bag (we had added a strip of hypafix to the side which may have done the trick). Paul said it was wonderful to hear Noah laughing out loud at some of the slapstick comedy.
Noah tells me his favourite part was "killing cranes" but I can not find any pictures of this.

I have two more papers to do at Massey next semester which is really half-time, so I'm hoping they will fit with what ever surgery or appointments Noah needs. In fact I'm thinking I should brush up on my medical school type learning in case I go back to work. I am even considering working for USMLE step (the American boards first exam) as my medical degree is 32 years old I may need to do this before being allowed to work in NZ. I am starting with embryology as this is very relevant to Hirschsprungs disease and realise I have forgotten everything I ever knew about the GI tract and its formation!

first blockage

We'd just decided that as today is a holiday in NZ, Paul and I would go for an early morning walk leaving Hannah to babysit, when we discovered that not only had Noah's small bag leaked all over his bedding BUT he was complaining of pain and some rigidity in his tummy - he describes this as "I have had a stroke" remembering that grandad doesn't move much now he's had a stroke. Every time we start to relax it seems something new happens.
Nothing was coming out his stoma and the stuff in the bag was very thick, so he obviously had a blockage/obstruction of some kind -perhaps due to the vast amount of poorly chewed pizza he consumed last night. The stoma itself had almost disappeared, retracted right back to skin level.
Paul as usual was calmer than me so we removed the bag and popped Noah in the bath to relax him, rather than going to the hospital.
I looked up what to do on-line and it said to get in a bath, have a warm drink and gently massage around the stoma, then if it doesn't clear you can irrigate the stoma (I guess this would be similar to the rectal irrigations we had to do when Noah was little, but still I don't fancy sticking a catheter up the stoma).
Luckily after a while in the bath and bending his knee to his chest a few times it started producing again and the stoma came back out again. Once he had a new bag on we put on some music for Noah to dance and stuff started pouring out so the crisis was over - we didn't get our morning walk though.
Since then he has needed two further bag changes and we have now tried the paste that can go round the hole in the bag, but this just stung Noah for a long time and didn't improve wearing time, so we won;t do that again.
This afternoon Paul is being brave and taking Noah to watch TinTin at the cinema with Hannah and Sam while I babysit Isaac. I have packed him an ileostomy change back along with a spare t-shirt for Noah and at least they will be sitting in the dark if there is another leak!

leakage at McDonalds

We woke this morning to a leaking bag of Noah's - it's a good way to get us out of bed when he comes close!
As it had been on for nearly 48hours we didn't worry too much but gave him a bath. We had none of the convex bags left just a collection of big and childrens bags (until supplies open again after the holidays) so used one of the big bags. About two hours later Noah told us it was leaking - he was right and that meant the second change of clothes for the day along with all his sheets (its a bit like laundry for a newborn all over again). With another big bag on we went out for his choice of first time eating out to McDonalds. After his food he wanted to play on the playground, Paul checked his bag first and it was leaking again. Noah was determined to still play which was obviously impossible, so although we felt very sorry for him as havign the ileosotomy is impacting his life so much, he had to be dragged out of McDonalds in the end by Paul and I displaying his bag and stoma to all as he struggled making his t-shirt lift up. We came home (as we certainly do not yet have the confidence for a bag change in McDonalds) and Paul put on a children's bag for another try while I did another load of washing.
We are looking forward to the day when we find the right bags so that we can do as the stoma nurse has suggested and change them every 3 to 4 days, so far we have not lasted to a planned bag change at all!
Noah's output was very liquid today and had reached 350ml by lunch time - this is supposed to be our 'take action' point, but he seems well so we've just given him a loperamide tablet and some extra drink for now.

Quiet New Year

The older kids went to a party so it was just Paul and I and the trisomy tribe at home. We almost forgot it was New Year's Eve and just had a quiet evening eating Paul's home made pizza, watching some of our UK DVDs from amazon - Rev and Downton Abby and were in bed before midnight!
We have used the ileostomy bags marked "in case of severe leakage" and Noah went 48hours without leaking! These are convex bags and can have a belt attached so I think we will see if we can get a bigger supply and a belt once the holidays are over.
We dared to take Noah out to the shops to buy a new pair of sandals and then got an ice-cream. I had enough supplies with us to be able to change his bag in a public toilet (how terrible that would be) and of course that meant everything was fine.
We may dare to take him to the cinema or McDonalds on Monday.
Today we are having a celebration birthday meal for Beth as she returns to Oz tomorrow and her birthday is Jan 4th so I'd better go to the supermarket and buy some food! Beth is kindly babysitting while Paul and I do this.