I had a terrible night with Isaac on Monday night - for forty minutes he was just rolling around in pain screaming until I gave him a second dose of morphine (most of the first one had been spat out or leaked out the fistula from where his gastrostomy used to be) then at about two thirty am I gave him some losec and he ate three calciyums in quick succession and they just poured out his side - I think night time is bad because the contents of his stomach become more acid he prefers food to be leaking over his skin then just the acid.
He got some sleep after that but I didn't I just lay there worrying - haven't felt so bad since Noah was in the neonatal intensive care unit ten years ago.
In the morning I phoned the home care team in tears saying I was so unhappy about Isaac and could I bring him in. They got me an appointment for 2pm and again I packed for a possible stay for both Isaac and me.
When we got there Isaac decided to put on a show of not being in pain but being cute, but luckily this didn't fool them once we took off the disposable nappy he wears on his fistula and they saw the hole pouring food and with bubbles of air and the skin loss around the hole.
The surgeon in Wellington had said wait at least a month so I asked if we could have a second opinion from the surgeon at Starship. Unfortunately when the paediatrician managed to get hold of him he suggested waiting SIX WEEKS!
Following the advice of the Wellington surgeon they decided to put a foley catheter into the hole to see if that would stop the leakage and give the skin a chance to heal. Isaac had some medazalom drops up his nose and soon became totally sozzled (very cute) and barely complained when they put the size 8 Foley catheter in.
Through the night he was pretty good, just waking at 4am for some morphine (I'd only given him panadol at bedtime) but this morning it looked a bit yellow around the skin so I hoped there was no infection.
Suddenly around 10am it started leaking around the catheter again. He has now gone for a sleep with the skin no longer looking infected and no temperature. The homecare nurse has phoned for an update so we'll wait and see what they decide next.
It's a shame to have gone from such a happy little eating boy to this rather sick child and is perhaps worth other families knowing before they rush to take out their child's PEG or button.
Love Does Not Delight in Evil, but....
3 days ago