I phoned the homecare team around lunch time and they said the paediatrician could squeeze us in and see us at 4pm. I cannot praise the paediatric department enough here, they have gone out of their way for us.
I picked up Noah from school in the pouring rain and told his teacher that we were taking Isaac to hospital and not sure if he'd stay in or not, just in case we had trouble with getting Noah to school next day as everyone we know who might babysit Noah is involved in Special Olympics.
We packed a bag for Isaac and me just in case we were kept in. I suddenly realised how long it is since we've done a hospital stay when I dug out the bag, discovered that Isaac is now in a bigger size of nappy than those packed in the bag and that the chocolate bar in it was time expired! I packed my china mug with some Nescafe coffee and vanilla tea (this tiny luxury always makes me feel so much better than drinking poor quality tea and coffee out of the disposable cups in the parents kitchen!) and a puzzle book and novel for me (you can tell we have spent a lot of time waiting around hospitals when these are the essentials of packing!)
We then got a taxi to the hospital. Noah got in and started peeling off the sticker with prices on and the taxi driver said "Can you tell him to stop doing that?" so I wondered what kind of ride we were in for. I got out of the taxi, put the child lock on Noah's door then got back in and off we went with me hoping that Isaac's stomach contents wouldn't leak all over the taxi!
I fed Isaac some custard once we got to children's clinic and it oozed all through his dressing and over my clothes - still as the doctor said "At least it smells nice!"
The nurses had talked to the stoma nurse - who actually remembered us from when Noah had his colostomy as a baby and asked them "Does Isaac have a brother called Noah?" She recommended putting Mylanta (indigestion mixture) onto the skin to neutralise the stomach acid and using the thick EPC cream.
One of the home care nurses recommended putting a sanitary pad or disposable nappy over the gastrostomy to suck up the fluid and keep the skin as dry as possible.
The paediatrician gave us a prescription for Losec so the stomach contents wouldn't be so acid and morphine for the pain and to help Isaac sleep through the night. He had spoken to the paediatric surgeon in Wellington who said that gastostomies almost always close themselves within one to two weeks and if the worst came to the worst, Isaac could have a few days of nasogastric tube sucking out his stomach contents while he was kept hydrated by IV fluids (This is not something you really want to do with a child who has just learnt to eat and has any kind of oral aversion though!) He said surgery is not as simple as just putting in a stitch because the whole gastostomy channel needs to be removed to prevent a fistula developing.
The pharmacist kindly made up some liquid Losec for us in the last half hour the pharmacy was open and then we raced home picking up takeaways on the way and got home soon after 6 o'clock needing to leave at half past for the special Olympics opening ceremony.
We gave Issac all his drugs and put a disposable nappy on his site, then sat there watching the ceremony as the smell of strawberry milkshake escaping from the gastomsomy grew gradually stronger and I grew stickier as it leaked slightly.
Once we got home at 10pm Isaac ate a pot of calciyum and drank (a first for him must be because he was loosing so much fluid through the hole) about 100ml of my concocted mixture of custard and milk mixed to a just liquid consistency. We gave him a bath, put on the magic cream and two disposable nappies - one in the usual place, one by his gastrostomy and he slept the night through.
This morning he looked rather pale and was still in a bit of pain so I gave him some more morphine. After breakfast I bathed him and realised the site is looking better and hardly leaking!!!
He's now having a sleep without any dressing on the site and I think we may be getting there - oh I hope so!!
These are very graphic photos so I apologise but they may be helpful to someone in a similar situation.
This is the site about two hours after the button removal - I had just given Isaac a bath.
This is the site today 48 hours later - you can see the hole is much smaller and the skin is beginning to heal (the redness around is because Isaac has very sensitive skin and has reacted to the tegaderm they used to hold the initial dressing)