These are the two main issues we're dealing with at the moment.
Sleep:
Each night I pray that she sleeps through the night. She's been doing a couple of waking-at-3am-sleeping-at-6am. Which really messes up her sleep routine. It's always due to a blocked nose. We saw her ENT doc and a scope revealed that the adenoids in her nasal area are swollen. This reduces the space for air intake. She's now on Nasonex - a nasal spray with steroids. It's meant to shrink the adenoids. So far, it seems to give her relief enough to remain asleep. Hopefully it works long-term, else we'll have to resort to surgery to remove the adenoids. Anyone out there have experience on this? Surgery I mean.
Poo:
It was going to happen sooner or later. On a 100% milk diet, Vera has become constipated. She needs fibre. But we're advised to only put milk or liquids through the tube. So how? Anyone have "fibre" solutions to share for tube-fed kids that won't clog up the button?
8 comments:
I hope her nose heals on it's own then you don't have to go through surgery. Do you give Vera water in between her milk feeds? Jonathan is on milk all the time and although sometimes he constipate, he still can poo well every day, if not alternate days. My friend suggested boiling some vegetables and using the greeny water to mix the milk in. I don't know if that will help. You could also blend fruit juice and strain the pulp till it's only juice water.
will prune juice help?
We are having the same problems with Ally's nose. She's on the same spray and is constantly snoring. We were told it could be due to her reflux that's causing all these problems as well. Like you, we're hoping to avoid surgery, won't know till her next ENT apt on the 28th.
Jillian: Yes, we're gonna find out if it's reflux causing it too. Cos if we take out the adenoids and there's underlying reflux, the adenoids will swell again.
Serene, Rae: Thanks for all the tips! now giving prune juice, but I think I'll need to try some juices and cereal.
may when you say milk do you mean pediasure? or is it just regular milk? kaiya gets pediasure and they make it with fiber now.
We use Pear juice in Nalah's gtube to help motility. Was recommended by her Homecare Rn. It works nicely together with her various meds/laxatives. We noticed a difference giving about 30 ml per day. Also we do 400 + ml of pedialyte and clearfluids in addition to her formula. Not sure how to get fibre thru a tube feed. Good luck!
Marianne Friesen
May, can vera take probiotics for children?
Ivay
There is a yahoo group called Blenderized Diet group (or maybe it's hyphenated?) ... you could ask there. We give pureed foods through the tube, but I wonder if I would be so brave about doing that if Mal had a tube that cannot just be popped out if we happened to clog it? I have never clogged the tube (a Mic-key or Mini), either ... although I have clogged extension tubings. :)
but you could ask in that group if anyone ever gives anything like foods through a Bard button, and also ask for advice about pooping. I know some people swear by probiotics .. we use a yogurt-like product that has more than just one live culture. It definitely helps ... unless it's the cod liver oil and vitamin C and magnesium.
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