Tube fitting did not go well though despite preparations. we have a rabbit toy here who currently has had a straw placed in her nose to go with a story Josh was given about having an ng tube. Ethan and Josh i think got a lot out of the story and teddy though. I expected tears, like Josh, during fitting but he alternated crying with screaming for hour and half after, before conking out then waking up crying when he realised it wasn't a dream. then cried shortly for blood tests and again throughout 20min feed. He was a bit better when allowed home but cried though feed again that night. this morning he was unimpressed but a bit better and now copes with most feeds but does like to have his dummy during them, which is fine cross about not eating- lots of smacking me at naptime but adjusting ok considering.
Best of all no pulling it out yet, he seems to get that they will just put it back and thats the worst bit. hopefully he won't forget and knock it out in his sleep.
Next steps; it is apparantly very hard to treat in under 5s so we have GOS referal for genetics and to examine slides of biopsies. After the diet and medication its hoped the disease will be in 'remission' otherwise there are other stronger treatments available. He needs an ultrasoud possiby an MRI to see the part of the small bowel scopes miss. We are back in about 3 weeks to review how its going
Today the community nurse visited this pm and is getting equip sorted so i don't have to do it all manually. arrived with huge amounts of supplies. The hardest things at the moment is working out how to eat in shifts and fit in things we had planned so the big boys don't have a miserable summer too, and coping with tiredness from being up at night a lot.
Next steps; it is apparantly very hard to treat in under 5s so we have GOS referal for genetics and to examine slides of biopsies. After the diet and medication its hoped the disease will be in 'remission' otherwise there are other stronger treatments available. He needs an ultrasoud possiby an MRI to see the part of the small bowel scopes miss. We are back in about 3 weeks to review how its going
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| a melted boiled sweet stuck on a stick. he is allowed 2 of these a day |
Today the community nurse visited this pm and is getting equip sorted so i don't have to do it all manually. arrived with huge amounts of supplies. The hardest things at the moment is working out how to eat in shifts and fit in things we had planned so the big boys don't have a miserable summer too, and coping with tiredness from being up at night a lot.
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