to sort out closing the blog, sorting out all the emails to give access to. think i may just have to leave it as it is, but try and provide a private place to link to for showing photos? that's if i can even get the time to sort out all the photos n slideshows etc, anyway just thought i'd throw in an update..
we have a date through for Lewis going back into hospital for reflux tests, 1 is called a PH test? have no idea what that involves, the other test i can't remember what was called?, can any1 tell me what these entail?
i'm not looking forward to going back there not after being home 3 months now, but i'm hoping we'll get to the bottom of some other issues as well, mainly the snotty issue though as he took such a bad snotty attack the other day i panicked so much he struggled so bad with it i'd hate to have seen his sats, then he managed to clear it by vomiting sooo much it got everywhere, poor wee man i hate seeing him like that it's awful seeing him struggling so much to breathe because of it and not being able to help him.
another issue we've figured is, Lewis won't swallow, maybe that's a lot of the snotty issue's problem, he chokes on it because he won't swallow it down. he must swallow a wee bit though because he's not drooling or anything so that must go down? i'm not sure why he won't swallow but in my search of the internet i keep coming across Dysphagia, does any1 have any experience of this with CDH kids? i juust don't feel like we can progress anywhere with oral feeding of any form as lonmg as he won't swallow, he just ends up breathing it in and then it goes down the wrong way and he chokes on it, it's the same with whatever you put in his mouth, such a shame for him struggling with something we do everyday without even thinking about it.
we're also still on 3 hourly feeds but have increased amount slightly only thing is he's only just on the verge between tolerating and not tolerating the amounts, what happens when he needs his amounts increased again, he won't handle even just an extra 5 mils, the only way would be to go 2 hourly and there's just absolutely no way that's possible, during the day yes i could do that, but during the night i just couldn't keep up with it, we only just manage at nights as it is and i don't think they'd give me a pump for night may be worth just asking though.
PLEASE THOUGH IF ANY1 OUT THERE HAS ANY EXPERIENCE OF SWALLOWING ISSUES PLEASE GET IN TOUCH
Hayley and Lewis xxx
Happy birthday
1 month ago
3 comments:
a PH test is where they put a probe into his stomach the same way that the NG tube goes in and just check his PH levels. reflux kind of stuff. It may sound like they may be doing an upper GI test??!! If that's what you were thinking, that is where they have the baby swallow (AKA swallow study) the barium and they watch through X-ray live to see if the food is going where it should be going. If it is going into the lungs then that's a bad thing, they can also see if he may need a surgery to close the top of the stomach to help with the reflux. Not too sure if any of this helps. Please do invite me into your new blog when you do get it up and running. I'd love to still follow little Lewis!
Bobbi :)
Hayley,
Wow...when you get a moment, read my blog post! I just wrote about Jaime's feeding issues and he's 1. Bobbi already explained the tests to you, so I won't, I will just let you know that both are non-invasive and will provide very useful info to you.
Wishing you lots of luck on your tests, please let us know how they go.
Hugs!
Sheryl
First of all your baby is a cutie =)
Camden can swallow...but doesnt eat by mouth. The reflux issue is so awful, and he has had a nissin surgery to help. He still tries to vomit everyday, sad to watch. We are doing faster feeds. He has had a pump and gtube since newborn. R they considering a gtube for Lewis?
We started out VERY slow,...and here he is 15 mths, and it is still a huge issue. The oral aversion is just so bad for those with such a rough start. Feel free to ask any questions...take care!
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