leaving the house

After the excitement of Christmas and hospital, it was good to have a bit of down time yesterday - although unfortunately Paul was back at work and quite busy.
Isaac is very clingy and miserable and looks like he's lost weight - hopefully just due to the total absence of his usual routine and people. Noah has also lost weight and is back to some annoying ways - like pulling all the wires out of the new kinect xbox they got for Xmas. We are still having a lot of trouble managing his ileostomy and I will maybe have to blog some of it just so I have a record I can refer to. But I have realised that we have been home a week now and Noah has not left the house!! I have been luckier leaving it three times (Xmas eve service, a short Xmas day stroll with Paul and a rushed Boxing day evening trip to the Warehouse with Hannah) but I feel I need some fresh air. So the plan today is go for a walk - I am leaving Noah 5 minutes while I write this for the idea to take root and then it will be time to force him!

ileostomy notes
Boxing day- change bag afternoon for leakage
Tues- change afternoon for leakage - same place
Weds - liquid output 250ml am, loperamide 2mg and marshmallows, leakage change bag lunch time and one hour later for major leakage, further loperamide at 4pm
Thurs - first thing bag change for leakage, green liquid output ?blue drink yesterday, cut edge of bag to avoid scar, metamucil given

Christmas celebrations

Rachel and Hannah babysat so Paul and I, Beth, Lily and Joe could go to midnight communion. This is a very special service at our church and incorporates the choir as well as modern music.

We got to bed around 1.30 am and at 5.15 Noah was excitedly awake so we let him climb into bed with us.

After a while I noticed the bed was wet, and our first present of the day was the contents of an ileostomy bag on our sheets! The day started with a bath, change of bag and some laundry, so for the first time ever the boys are dressed in the photos of opening the stockings!

We are getting better with ileostomy bags mainly from reading tips on line, so this time we warmed the bag on the aga, spent a long time drying the skin first then a long time making sure it stuck really well. We also dressed Noah in briefs as opposed to waist height undies and in swimming type shorts that close with velcro rather than a waist (this followed an urgent Christmas Eve shop trying to think outside the box clothes wise) This bag lasted almost 36 hours - our longest yet and only started leaking when Noah dressed himself in the larger undies again and pulled them right up dislodging the bag.

We had a traditional Christmas lunch and then our Christmas play written by Lily and Paul- the "Glee" nativity - some of the performers had never seen an episode of Glee but still the show went on until everyone rolled around laughing! To finish we all sang for Noah "I'll be home for Christmas" then he went round giving us all a hug.

Today we had Anika and James's family round for a BBQ and the weather was beautiful - I can not remember NZ ever being this hot over Christmas. I guess I am still a little stressed as I took a dessert pie out of the freezer, did not realise it needed cooking and decorated and served it raw!! Luckily everyone was too polite to mention it and could eat pavlova instead!

"All I want for Christmas is you" - Xmas Eve

We got a photo of all the kids together when Beth, James, Sam and Anika arrived on Christmas Eve to join Joe and Rachel.

Then we played "All I want for Christmas is you" and Noah instructed everyone to point at him for making it home from hospital!

Managing Noah's ileostomy - day 1

I changed Noah's bag just before we left hospital to a special children's bag. Unfortunately I think these are meant for quite young children as it leaked and needed to be changed twice yesterday whereas it should only need changing every three days.
This has been a bit rough for Noah (and for us, although the baptism by fire may have made us a bit more confident), It is quite a process to peel off the backing without hurting him or getting the contents over us or him, then the skin has to be absolutely clean and dry (to prevent skin breakdown) before applying a new bag with the hole cut to the size of his stoma (without cutting the bag itself -leading to leaks) the inside of the hole must be smooth and it must be applied directly over the stoma. All a bit complicated especially if the boy fights - we had Hannah hold his legs, me his arms while Paul peeled the bag off. Luckily applying a new bag doesn't hurt at all so Noah cooperates for that.
Noah did get to have a quick bath before we reapplied the bag, although later I read that's not a great idea, it seems he will have to get used to showers now. He is doing well really. He is getting used to the ileostomy and helps to empty the bag and clean it with toilet paper. He is subjecting it to a few tests that most adults wouldn't - like climbing out of Lily's bedroom window. He even lifted up his t-shirt and said to someone "Look, pooh in a bag!" I hope Paul and I can become so down to earth about it too!

Apologies and our (outdated) Christmas letter

Apologies to all our NZ friends - and even family, Caroline - who will not be receiving a card or gift from us this year. We have lost ten days of our life to hospital so it is only the Christmas stuff I did before then, that is happening (luckily that incldued all UK cards). We have enough presents bought already (and I have been prevented from my usual top-up last-minute shopping) and I was planning just to give money to the older ones anyway. Paul and I did a supermarket shop last night and we will just do without anything we forgot.
We are still goign to have a wonderful Christmas and I think in many ways spending time in hospital is a good reminder of the first Christmas and the stress and uncertainty surrounding it.
This is our Christmas letter as received by those in UK, which obviously doesn;t mention Noah's recent escapade so is outdated.

We have just put up our new ten foot Christmas tree that I had been hankering after for our front hall since we built the new house. I first showed Paul an even taller and much wider Christmas tree that cost twice as much so this one seemed cheap in comparison! After we spent ages decorating it with teddies and red baubles Hannah told me “It looks just like a department store tree.” We’re not sure if that is praise or not!
This year has been the year of the wedding (times two) plus Isaac starting school, Noah starting secondary school, Joe returning from Korea and getting a job in Auckland, Rachel and Adam moving to Queenstown and me returning to study and discovering how slowly my brain works.
Beth and James’ wedding in April was the first time all eight of our children had been together for years and now they will all be together again on Christmas day, so we are really excited about that and Lily is planning a nativity play based on the TV show “Glee” –her new obsession. So far she has cut up a cardboard box for Joe to wear on his back as the donkey!
A quick rundown on family and events during 2011:
Joe – came back from Korea in April, worked for a while on INR online ( – a computer programme for warfarin management developed by Joe and Paul which the new National (conservative) government have pledged to roll-out for use in pharmacies nationwide) then moved to central Auckland and got a computer programming job. He sent us a text as the rugby world cup started saying how busy it was by his flat.
Sam and Anika – had a holiday in South Africa in February so Sam met Anika’s extended family. Anika has qualified as a registered psychologist and Sam continues as a food technologist developing muesli bars. They may move to OZ in 2012.
Beth and James – got married in NZ in April and then blessed in UK in Oct, but live in Sydney. James has been upgraded from doing a Masters to a PhD in ancient history at Macquarie uni and Beth commutes to central Sydney to work at a law firm amongst the poshest shops (Jimmy Choo, Tiffany and Prada).
Rachel and Adam were planning to move to the Gold Coast or Brisbane but Adam got offered a good job in Queenstown so they’ve moved there. We met them earlier in the year at the Taupo iron-man as Adam’s brother who is a firefighter was doing it as was my brother Jon. Both finished with really good times.
Lily has just had the movie premier of her latest movie about people with Down syndrome transferring from school to work. She loves performing to an audience so spoke really well and was delighted when she received a bouquet of flowers. She has just voted in the recent election – she told us she planned to vote ACT (a far right party) as she likes acting but we managed to dissuade her! Next year she will try flatting with two friends who also have Down syndrome. We have far more concerns about this than she does – her only worry is giving friends ‘change of address’ cards.
Hannah turned 21 in January and followed Lily’s lead by choosing a holiday in Disneyland with the family. This was great, beautiful weather but very quiet as all American kids were in school. Hannah did her first social work training placement working with adults recovering from head injuries. This meant she had access to lots of arts and crafts and she made us some lovely things as she worked alongside her clients.
Noah is enjoying school and is proud to be able to walk there himself. There were problems for the first few days as he thought this was an opportunity to walk anywhere he liked (especially to nearby Savage Crescent – his favourite road as it has 8 roads leading off it) but this eased once he had explored all the possible routes around his school and done lots of weekend “dead-end walks” these are exploratory nieighbourhood walks where we walk all the way round cul-de-sacs. His behaviour is gradually improving and he is longing for puberty to start (it may be, as he now stays awake until almost 10pm and then doesn’t want to get up for school in the morning).
Isaac is still a rather fragile little boy, wearing size 2 clothes at age 6, and not having much language. Still he is a happy little boy and no longer in pain, so he has made great progress since his early years. He currently loves the teletubbies and was so pleased when we managed to buy four little beanie-baby teletubbies in the UK. He enjoyed the plane travel sitting cross legged in his economy seat which was so big for him, watching his portable DVD player – he looked like a mini-business man!

As for Paul and I – Paul continues to mostly enjoy his work as a haematologist and is now wanting to write a few medical apps for the IPad, I have found study quite tough, especially when my life experiences don’t fit with the blanket statements we are taught (forensic psychology from a social justice perspective was a particular problem to me!!) but now realise I like giving my brain a work out so will be exploring returing to some kind of work next year. We have also taken up bridge lessons and play much better now we obey a few rules rather than bidding totally idiosyncratically as we did as students! We really enjoyed seeing so many of our extended family this year, first at the actual wedding in April and then at the blessing in UK.
We wish you all a wonderful Christmas and New Year.

home -after 10 days

After seeing every other patient on the ward home before him, it was finally Noah's turn.
He first had his staples taken out this morning and put up quite a fight needing three of us to hold him down - he then apologised to the nurse for the fuss!
I changed his ileostomy bag for the second time and he now has a more child sized bag. We have strict instructions to measure his pooh (the joys of parenting!) and we have to aim to keep the output between 250 and 350ml day, any more and we have to contact the surgical registrar to see if he needs IV fluids again, any less and we have to cut his loperamide dose. We are going to get good care from the district nurses - one phoned after I'd only been home for an hour.
Noah said the things he wanted most about home were his own bed and an internet connection (for google maps) but he is now tucked up in Lily's bed listening to the script for this years Christmas play.
Paul is away at a clinic in New Plymouth and gets back tonight, Joe and Rachel arrive tomorrow and Sam, Anika, Beth and James on Saturday - I am just beginning to realise how much there is to do to prepare for Christmas but thought I would first update the blog with our good news.
I have promised Noah we will take a Xmas photo of all the family around him singing "All I want for Christmas is YOU".

Doctor Noah

Noah is much more active. He found the controls for his bed and has managed to put it into all sorts of different positions. At one stage he had the bed as high as it would go and on another he was lying on about a 45 degree angle almost sliding out of bed. He has also been praticing bandaging and managed to bandage his own ankles, legs and arms.

It is hard to believe he had major surgery only a week ago. Today he did say his tummy was hurting a bit, but he had just gone down a slide and dropped about 6 inches off the bottom and on another occasion climbed through a tunnel on the climbing frame.

Hopefully he will be home very soon.

real clothes

Today is one week from admission and Noah put on real clothes again to go for a walk (took a bit of persuasion as he now in a rather teenage way like lying in bed in pyjamas being waited on by nurses).
I'm not sure whether the elastic waist of his shorts is supposed to be above or below his stoma = it falls naturally directly on the stoma (usually the stoma position is carefully planned before surgery but obviously this wasn't possible in Noah's case)
I changed the stoma bag for the first time today with the stoma nurse there to guide me. Noah covered himself totally with a sheet in the hope that we wouldn't notice him and would leave him alone then fought for a long while. The nurse said "But he was so quiet last time" so we explained that was how we knew he was sick!
Anyway I did it and Noah showed a bit of interest and helped roll up the end of the bag.
He is still producing too much fluid in the ileostomy to be able to replace it by drinking so we will probably be in till Thursday by which time it is hoped the ileostomy will have settled somewhat.
I'd explained that Noah loves bubble gum flavoured pedialyte but children's ward wasn't able to get any from hospital pharmacy. (All children prefer the bubblegum to the fruit flavour - that's why children's ward had run out) However by the entrance to the hospital is an independent pharmacy and they had a bottle and were able to get five more in by early afternoon and Paul was able to prescribe it so it only cost $3. Noah immediately drank 2 cups of this which may even help replace some of the minerals he is losing.
He will have his blood electrolytes measured again tomorrow and hopefully his haemoglobin as he looks a bit pale. He has walked a bit further today (he was allowed a two hour window without his drip which meant he could leave the ward) but gets very tired. Paul also has to work this week as many doctors are off for holidays over Xmas, this meant I had both Isaac and Noah with me which was a little awkward at times. On Weds and Thurs Paul has A clinic in New Plymouth so it will be even more interesting then.
Now need to catch up on washing, bath Isaac and maybe think about how far behind we are with Xmas preparations while I (Angela) have an evening at home.

Riding and walking

Improving even more today. Only one drip left. Noah must be getting better as he created more fuss having a plaster removed from his drip site than having the drip put in. A bit more of the real Noah defiance today.

"I do not want to go for a walk",
"I do not want to get out of bed",
"I do not need a shower"

Early in the day we took Noah off the ward in a wheelchair. My (Paul) driving was a bit erratic but Noah seemed to enjoy racing down the Hospital corridors. We went to my office for a treat and looked at one of Angela's hairs under the microscope (couldn't manage to find one myself to pull out!). Noah enjoyed this but got tired very quickly.

However his recover is amazing. This evening we went for a walk to the main entrance of the hospital.
Today I think that Noah (and I) are beginning to realise that it is a big thing to have an ileostomy. After his shower today Noah looked at himself in the mirror and cried. Made us all a bit sad.

Noah's air bag

Santa said that as Noah was so sick he could have an early Christmas present of epic mickey T'shirts. Here is Noah wearing clothes for the first time since Monday -proudly modeling the t-shirts.

I (Angela) am home for Saturday night. I walk in the front door of home and am overcome with weariness even though I feel OK while at the hospital. My eczema is flaring up though which I guess shows I'm more stressed than I realise. I have been catching up on emails and its wonderful to read all the messages of support and realise how many people are praying for us.

Noah seems more of his old self today - he told his nurse she was "pathetic" and when I said that was very rude and could he please say something nice he said she was "unpathetic"!

He calls his ileostomy his air bag but he still doesn't really want to acknowledge it or look at it. He had decided that he could not be a 'cool' boy if he had a bag on his skin and told Paul that "cool Noah was dead and sick Noah was here" As he feels a little better he is beginning to believe he may one day be cool again.

He also told us he was scared as he thought he would be living in hospital for evermore!

He is reliving a little of his experience now - there is the story of a child having surgery on the wall of children's ward and he has slowly walked along to read it with Paul or I pushing his 'robot' as he calls his drip stand! We have to tell his story and compare it to the child on the wall, there are some differences - for instance Noah went to theatre fully dressed whereas the non-emergency child is wearing a hospital gown! We have to talk about his getting tummy pains (which he unfortunately blames on Paul's BBQ) coming to hospital, having an x-ray, then getting a drip and going to theatre.

His dressing was changed yesterday and again he didn't want to look at the wound although we took a photo as we know he will be interested one day - he has more than twenty staples in an incision basically vertically from his sternum to pubis, the original scar from his baby surgery looks very small in comparison.

There has been progress today in that all of his pumped IV medications have stopped (this makes much less work for the nurses) so he no longer has his IV paracetamol, gentamicin, amoxicillin or flagyl - I am hoping that not being on these strong antibiotics may help decrease the copious watery secretions from his ileostomy. He has started loperamide (immodium) to also try to help this and has learned to take the tablets so we are very pleased with him.

They have also stopped his maintenance IV fluids with the plan being that he will drink enough to cover this, so he is only on replacement fluids for whats lost through the ileostomy.

His catheter is out and he is walking (rather bent) to the toilet now and was disappointed this morning that there is no longer a few drops of blood in his urine as there had been the first few times after his catheter was out.

He is allowed to eat what he likes and is picking at a rather odd assortment of food - it is a novelty being able to choose from a menu - so he had rice, chicken nuggets and salad for lunch - ignored the rice and salad and Isaac ate most of the chicken nuggets while Noah nibbled one. Paul brought in McDonalds pancakes for breakfast and at the rate of one bite per half hour Noah finished one just in time for lunch!

Still he is so much better, bouncing back really, and the exhaustion and poor appetite are to be expected. He will need to be in hospital till he is not pouring so much fluid out into the ileostomy.

Tonight is boy's night with Paul and tomorrow they are hoping that Noah can go in a wheelchair to Paul's office for the treat of looking at blood films under a microscope! He was allowed to be disconnected from his drips for a few minutes today when we pushed him the route he took to theatre so we're hoping he can manage a longer time without being exhausted tomorrow.

We keep reminding each other of our Christmas songs - Noah's is "I'll be home for Christmas" and ours is "All I want for Christmas is you"!

Good progress

Noah has made a lot of progress today. Yesterday he was a bit weary but managed to get out of bed for a short time (on right), but today he is much brighter.

He had a couple of iceblocks and some chips. A bit exhausted now but more like his old self. He thinks the "cool" Noah is back.

Noah today

Cool Noah today

Dr Lily House

Lily thought Noah had Mickey Mouse fever and offered some advice.

Some tubes out

Noah is bit brighter this morning. The nasogastric tube and Cather came out first thing. Noah did not enjoy this. Had a bit of a sad time. Noah finds hospital "too scary". He would like to be a 'cool' boy again but at the moment he is a 'sick' boy. Noah managed to get to the shower and even walked back to his room.

Noah in hospital photos

this picture is immediately post-op in the recovery room, you can see Noah still covered in iodine
and trying for a few minutes without oxygen


taken tonight with Noah trying to smile. The NG tube has also been fastened more securely after a mishap where Noah pulled off his oxygen mask and the ng tube came out a little. For the rest of the day yesterday they thought there was nothing in his stomach until he proved this wrong with an enormous vomit and then drainage of 350ml of nasty stomach contents once the tube was replaced and unblocked.

Noah perforated bowel

Life changes so fast. We had a really good week with all sorts of Christmas events and at the Friday Down syndrome party I even dared say "I've stopped having to worry about the boy's health ."
He was fine on Sunday lunchtime then suddenly got tummy ached and just lay down and complained and wouldn't even get off the couch to watch a personalised santa message on the internet.
He went to sleep OK but still had tummy ache din the morning enough that I didn't want to leave him to take Isaac to eye clinic. When he said his shoulder hurt, I phoned the GP surgery(shoulder tip pain can be a referred pain from the diaphragm being irritated) they couldn't fit him in till 2.45 but when I phoned Paul obviously worried, Paul said he'd go down to children's clinic and talk to a paediatrician.
We thus bypassed the usual referral system and were seen at 1pm, x-rayed immediately which showed air under the diaphragm and dilated small bowel (signs of perforation) and in theatre by 3.30.
The paediatrician involved is the same one who was miraculously present at Noah's birth (who we knew from our church) and he is now literally days away from retirement so Noah will be one of his final patients.
They considered airlifting Noah to Wellington - the paediatric surgery unit - where his previous bowel surgery was done. The paediatrician spoke to his original surgeon in Wellington who said it was such an emergency though that Noah should have surgery in Palmerston North (this is of course more convenient for us).
Two and a half hours later (and some heavy duty antibiotics and a lot of questions about what pain relief as Noah is probably allergic to morphine) the surgeon came to tell us there was a very small hole just where the small intestine exits the peritoneum (Noah has no large bowel since his neonatal surgery) but that the lower bowel looked chronically obstructed functional not mechanical (ie not a blockage or twist) so he had spoken to another surgeon in Palmy and the original surgeon in Wellington and they all thought Noah should have an ileostomy to avoid a further perforation if they just repaired the hole and left the chronic obstruction.
The theatre and recovery room staff were wonderful and it was Hannah's best Friend Heidi from primary school who was the nurse on for Noah and of course had known and cuddled Noah as a baby.
Noah came back with 8 "tubes" as he is already proudly calling them - a catheter, abdominal drain, ileostomy, sats monitor lead, oxygen mask, nasogastric tube and two IV lines.
48 hours later he has dropped the oxygen and monitor but his gut is still not working so he is needing quite complicated fluid and electrolyte balancing along with pain relief - this includes IV panadol which I had never heard of.
Paul is sleeping there tonight and I plan to bath Isaac, shower myself and have a long sleep in a comfortable bed.

Lily's premiere

The NZ Down syndrome launched their 'plan for the future' DVD on Tuesday which features Lily as one of the three stories about moving from school to work. Lily of course was overjoyed to be the guest of honour at the Palmerston North launch. She spoke very confidently and clearly about how she had always wanted to be an actress and this was her 'red carpet' moment and she accepted her bouquet of flowers as if it were her due! Noah and Isaac behaved pretty well - we bribed Noah with the treat of fish and chips afterwards and dressed Isaac in his pyjamas (very cute Christmas ones) so we could put him straight to bed afterwards.