Friday, February 24, 2012

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.

Wednesday, February 22, 2012

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.

Monday, February 20, 2012

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!!

Sunday, February 19, 2012

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

Friday, February 17, 2012

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!

Thursday, February 16, 2012

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.


Wednesday, February 15, 2012

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.

Monday, February 13, 2012

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.

Sunday, February 12, 2012

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.

Friday, February 10, 2012

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.

Wednesday, February 8, 2012

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.

Tuesday, February 7, 2012

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.

Monday, February 6, 2012

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.

Friday, February 3, 2012

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.

Wednesday, February 1, 2012

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 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 at twice the price it would have cost from!! 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.