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Post by vickia on Oct 2, 2006 17:15:53 GMT
Thomas had his first experience of an NG tube on Friday. He was admitted to hospital cos his breathing was a bit laboured and he wouldn't feed. The tube was in 3 days and came out today cos he was doing better. Came home from hospital today and he now won't feed again!!! He's only had 280mls of milk today. I'm now stressing and don't know what to do. I really don't want to take him back to the hospital (it wasn't our usual hospital and they were rubbish. I had to stop them giving Thomas twice as much meds as he should have this morning cos they'd measured them wrong!!! the nurse blamed the fact it was early!!) and I'm soooo tired cos I've been with him since Friday and they won't let me sleep!!! I even have to give him his meds during the night! The only time I didn't was 6am this morning and thats when they got it wrong! I'm now sitting with baited breath wondering if he's gonna have enough milk today.............
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Post by njcorbett on Oct 2, 2006 17:30:44 GMT
Oh, poor you! You and Thomas are not having an easy time at the moment. Do you have "open access" to your usual hospital? We have that here, we can call the childrens ward for advice or take them in out-of-hours if we feel it is needed. Try giving the hospital a call and explain the situation to see if they can advise you what to do. I know how stressful it is when they refuse to eat or drink. Lucy had been off her NG tube for 2 weeks until the weekend when she caught a gastric bug. She is now only taking 50mls a feed and no solids. I hope this helps Nicola
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Post by Rilith on Oct 2, 2006 19:39:31 GMT
(((((((((HUGE HUGS))))))))))) These babies are very clever you know. Once they know food can get in their belly without having to do anything they get lazy.. Holly was the same when she had hers. She had it cus she was ill and still has it now. Did you manage to get oxygen sorted out??? I found that to be really helpful when Holly got breathless and tired, it would just perk her up enough to manage that little bit more. Failing that, little and often works a treat too. How much milk is he on now normally??? How long has he been on the high calorie milk now??? Holly's milk intake dropped by half once she was on the high cal stuff, she didn't need as much to satisfy her. You are doing brilliant hunni. Not much longer to go now
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Post by vickia on Oct 2, 2006 19:48:08 GMT
Thanks Nicola & Rilith.
My hospital does have an open access policy but unfortunately they had no beds on Friday night so I went to another hospital near us. Unfortunately they refused point blank to even consider transferring us to our usual hospital when a bed became available. The doctor was really stroppy and asked 'whats wrong with our hospital. Are we not good enough for you?' How do you answer that!!
Thomas has been on SMA High Energy for about 10 days now but I really don't think he likes it! I'm gonna try going back to his old milk for his bedtime bottle tonight to see how he gets on. He's been having 100mls every 3 hours in hosptial and while he was drinking it I'm absolutely exhausted at getting up 3 hourly for feeds as well as his meds!! Mnd you' I'd be really happy if he'd have 100mls/3 hours now! lol
As for oxygen, no one has mentioned this to us but Thomas does have a cardiology app on weds so I might just mention it then!
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Post by Rilith on Oct 2, 2006 19:53:57 GMT
Is he hungry for it? Or is it just what they have told you to do??? Holster would quite happily sleep through the night and not wake for it, but she would be hungrier in the day for it
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Post by Rilith on Oct 3, 2006 10:47:01 GMT
How is he today hun???
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Post by vickia on Oct 3, 2006 11:16:31 GMT
He's ok in himself thanks but still not taking much milk. He doesn't want feeding every 3 hours so I'm not waking him up for it cos he won't take it. His last bottle last night was at 9.30pm and he took 100 mls. He then slept from 10.20pm to 5.50am today and took 100mls on waking. He had another bottle at 9.30am today and took 55mls. He really isn't interested in the milk. He doesn't seem too breathless so I just don't know what to do! I spoke to the dietician earlier and she says he should be taking 800mls a day. I think I would be amazed if he took 500mls.
I really don't want to have thomas readmitted to hospital if I can help it cos he'll be going in soon for his op anyway. I want to keep him at home for as long as I can!
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Post by lizzymd² on Oct 3, 2006 12:44:55 GMT
awww you poor thing, is he putting on weight? from his pics hes certianly not malnourished.
You're doing brilliantly by the sounds of things. 100mls is quite alot.
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Post by Rilith on Oct 4, 2006 17:11:18 GMT
800!! Its something like 80mls per Kilo they should have Minimum, maximum is 100mls per kilo, any more than that and you can cause puffiness. I had a huge debate with the dietitian about this one once... LOL Can't you tell... LMAO And How Heavy is he now 5kg approx??? 500mls then at most The thing they want is to fatten him up before the op, but you can take a horse to water but can't make them drink as the saying goes... LOL
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Post by vickia on Oct 4, 2006 19:09:35 GMT
Thanks Rilith. They've actually told me 150mls per kilo! Thomas is 5.25 kg so thats nearly 800 mls! He's having more like 500 mls per day. We had an app at the hospital today and they're not happy with Thomas' feeding so he's being readmitted tomorrow morning to be re-tubed! :0(
I can't tell you all how fed up I am already! Its only 4 weeks yesterday since we found out about Thomas' Downs and AVSD so its all happening a bit too quickly for me to keep up.
I'll probably be at the hospital for quite a while now, maybe until his op, but I will try to keep dropping by to see how everyone is and update you all.
Vicki xx
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Post by Rilith on Oct 4, 2006 20:55:23 GMT
Ask them to show you how to do it all. Holly has had her NG for AGES now, I couldn't imagine stopping in hospital to do the feeds. Even passing the tube now is a doddle and she doesn't bother at all. That used to it now the little minx... LOL Pulls it out 3+ times a day now... LOL.
I'll PM you my Mobile number and you can keep us posted that way, plus it'll be nice to be able to offer words of support to you too
((((((((((((((HUGS))))))))))))))
Stay Strong Hunni. You are doing really well. Just make sure once the op is done you take time out to look after you for a little while, and you get some councilling or something for you and your Hubby.
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Post by Rilith on Oct 4, 2006 20:57:27 GMT
Oh decided to email it to you instead
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Post by njcorbett on Oct 5, 2006 13:51:20 GMT
Lucy has had her tube since birth. I can pass it myself now too, thank goodness, as she pulls it out all the time. A little tip - I put Lucy to bed with socks on her hands and it stops her pulling the tube as much, great when you're in the car on your own as well. Take care Nicola
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Post by sarah on Oct 6, 2006 16:30:21 GMT
Just want to say I hope things are going ok and I wish you lots of luck. You must be exhausted - so make sure you get a little time to yourself if you can... sending a big hug from Daniel too.
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Post by sarah on Oct 9, 2006 13:18:58 GMT
Hi - saw you were online - how is Thomas doing? ( and you!)
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Post by vickia on Oct 9, 2006 13:29:14 GMT
Hiya
Thanks everyone for all your kind words. Just thought I'd give you a quick update. Thomas is still in hospital after being readmitted last Thurs morn. He is now taking oral feeds as well as he can and being topped up thru his NG tube - yesterday they tried him without his tube and I wasn't allowed to top him up. Result - miserable, hungry baby! Back to tube today lol.
The doc said we could come home today. Yipee I thought and packed everything up (I'm sure those of you who spend a lot of time in hospital know that this is no easy task seeing that half of my belongings are now on the ward! lol) Another doc came round a bit later and said that actually we can't go cos we might lose our place in the surgery queue! So we now have to stay in until either a cancellation comes up at a few hours notice or a regular surgery slot comes up for Thomas' op. This means that I now live at the LGI, my poor little boy, Daniel, never sees me and my hubby is doing reduced hours at work so that he can take Daniel to school and pick him back up. Aside from rushing home every so often to do some washing and ironing I never get out of the hospital. As I sit the washing machine is on its 2nd load and the ironing is sitting looking at me. I'm also trying, in vain, to co-ordinate our up coming house move which is a nightmare!!! Sorry to ramble on - I do that a lot ha ha!
Anyway, must dash but I thought I'd just keep you all updated. You all feel like a 2nd family to me now and I wanted you to know that I am still around - when I get chance to log on! lol
Take care, love to the little ones Vicki xx
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Post by pinkshell1110 on Oct 9, 2006 13:32:10 GMT
keep your chin up hunny things do improve and the hospital visits dwindle eventually luv to you all michellexxxxxx
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Post by Rilith on Oct 9, 2006 15:05:28 GMT
(((((((((((((((((HUGE HUGS))))))))))))))))))
you are doing great hun, keep perky for a lil bit longer. Then once its all over you can concentrate on yourself for a bit then.
Look after yourself sweetie
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