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.