It is now four days since Isaac had anything through his gastrostomy button and he seems to be holding his own. It's scary for us though and I so wish we had advice to turn to rather than muddling through on our own.
He still won't drink apart from sips of bathwater but will eat calciyums (a children's dairy dessert that turns to liquid if you stir it) so gets 150ml of fluid from that at each meal. I have found some fluid thickener so can gel flavoured milk or fruit juice for him to eat but he is not very keen on this.
He loves cheesy ball snacks (like wotsits in the UK) and they are up there with nutella with over 2000 kj per 100g! He also likes us to feed him bowls of weetbix mixed with nutella and cream or avocado and banana mashed with cream and a little golden syrup. He is eating about twice as much now as he did when he started and often signs 'food' to us.
We see the dietitian on Tuesday so hopefully can find out the best way to get in adequate calories and fluid.
He has finally stopped throwing food quite so much and if we're lucky will sign finished before he violently pushes away the dish. Although the floor is no longer so messy we are getting through seven or eight bibs a day that are very mucky!
We weigh Isaac by weighing ourselves first then us holding Isaac on our bathroom scales. This is probably not the most accurate measurement but he seems to have stayed at 11.3kg over the past few days. This is a big drop from the 13.2kg which he started from on our scales. However he is only 84cm tall so is still a reasonable weight for height.
This may be more information than you wanted but he has managed to produce a normal brown poo, rather than the horrible black liquid liquorice type stuff he produced on nutrini. He didn't even need lactulose and much to my amazement poohed in the toilet where I sat him to wait while I ran his bath.
Isaac's little friend Annika is now back from the Graz clinic in Austria MINUS her button! I am longing to catch up with her family and let Isaac and Annika have a ply picnic together.
What Now?
3 years ago
4 comments:
He is doing so well. Amazing how excited Mums can get over normal poos!
Sounds great. Although the food descriptions are making me feel a bit queasy this early in the morning.
You all are doing a wonderful job.
Bridget
It might seem a long process for you both, Angela and Paul, but I am amazed at the incredible progress Isaac has made in such a short time. I remember reading your blog over a year ago (just after I found it), when you mentioned making a birthday cake for him that he would not eat... I felt very sad for him then, not to know such a pleasure. And just over one year on, all of a sudden (it seems) there he goes, no need for his button...
It says a lot about the wonderfull parents he has!
As for the poos, I attended some months back a talk by the medical officer of Down Syndrome Ireland, and a good 20 minutes (at least) was devoted to the different types of poos one could expect... Guess what? It was so enlighting!... I never would have guessed before that I could learn so much from this topic.... ;-)
I have just come across an online forum dedicated to feeding children who have been tube-fed. Here's the link. Might be useful to get some other ideas. There was a discussion on how to add calories for example http://tubefedkids.ning.com/?xg_source=badge
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