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Thread: Felix's Chronic Interstatial Pneumonitis

  1. #73
    mooshie Guest

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    katanya

    so sorry to hear felix needs the ngt inserted. i tell you love you are a braver woman than i am to want to learn to put it in yourself - i know it is more convenient to be able to reinsert yourself if it comes out. and yes i sure do know what it is like when it goes in - my dd jessie had one when she was going through her cancer treatment (she couldn't eat anything orally the tumour spread very fast to the facial nerves so she couldn't chew) we actually were able to have a nurse come out to the home to insert it and she was lovely and told us that we would do it were she would not familirise herselt with it - ie we used a beanbag in the playroom and not on the couch (were she spent alot of time watching telle). i was terrifed that the tube had moved and i had to check the gastric juices each day before i fed her the "ensure" to make sure the tube was still in the tummy (i was way paranoid 8-[ ) we were lucky that we never had to get the tube re-inserted (even after a day of vomiting it didn't move) but if it did all we had to do was call the nurse and she would come to the home to do it - is there a service like this you could use, maybe check it out with the hospital or his doctor.

    hugs to you - i often read up on this thread to see how felix is going as i do with little jessalyn and alana but i find it hard to post most times as it can be a bit emotional for me at times to know what you guys are going through - i hated all the hospital/doctor/nurse visits everything.

    you are amazing and felix is so lucky to have you as a mummy.


  2. #74
    katanya Guest

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    That is a great idea Michelle about the nurse, I was really paranoid at first but each night I'd just use the litmus paper and it was always okay, I just am scared I would put down the wrong way..into his lungs.. 8-[ I have worked as a personal carer for years, and have done some rather unsvaory procedures, so it's not that that worries me, it's him crying while I do it..as you would all know your own child crying when you are doing something to them is so hard to bear, let alone when you have to concentrate on it as well..I can't switch myself off from him like I can with my clients..

    I can understand why you don't come here alot, all these things would bring back such painful memeories..thank you so much for your thoughts and advice..

    Anyhow I'll talk to the hospital to see if we can get a nurse to come up here and do it or get a local nurse to do it,

  3. #75
    katanya Guest

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    Just an update on Felix and the tube..all is going REALLY well this time..thank god..he hasn't pulled it yet (thank god) and I learnt how to insert it if he does and I actually think I can do it okay...I would prefer to do this rather than get a nurse to do it at the hospital..(haven't looked inhto the home care nurse because we've moved closer to the hospital)

    With everything else going on in our lives this is a a really welcome situation.

    The only hiccup we've had is that he had the runns last night, not sure if it' s the change in water but I am giving it another night to see if that makes a difference..

    Only thing is I can't see the weight stacking on this time like last time..he looks less gaunt but not chubby yet..hopefully it's working okay and we can get it out in a month like planned..we have a DR's appointment on the 3rd of Oct so will assess things then..

  4. #76

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    It's great to hear that things are going so well Katanya!

    Good luck at the Dr's appt. Sending lots of fattening up vibes!!

  5. #77

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    oh its great that he's taking to it a bit better this time katanya. I hope he started getting chunky quickly for you, its so good to see them get bigger. Matilda lost 1kg with diarrhoea within a week and it was so hard to see her ribs sticking out, and it took another month to put it on with massive feeding LOL I hope the tube fattens him up

  6. #78

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    I'm so glad to hear that the NGT is going so much better this time! Hopefully Felix will fatten up in no-time, and before you know it, it will be time for it come out again!

    Best of luck for your appt on the 3rd!


  7. #79
    Debbie Lee Guest

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    Good to hear it's going so well, Katanya. Sending chunky vibes Felix's way!

  8. #80

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    I'm so glad he's a little more settled about the actual process this time... makes it easier on him and you. And well done for learning how to do it if necessary!

  9. #81
    katanya Guest

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    Another update (from the library again ) Felix is getting fatter bit by bit, he's definately gained, he has a little tummy, and the great news is he's eating well as well, I just hope that this the last time we need the tube..

    Unfortunately he is sick ATM, runny nose vomiting etc..but at least with the tube it means he doesn't lose weight..even has been rying to eat regardless, something that he usually doesn't do..

    Tomorrow is his pead appointment so I'll find out the real sitution..we still haven't got the ADSL back yet by wednesday they say :roll:

  10. #82

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    Ohh poor Felix! Hope he gets better soon.

    That's great that he's gaining weight though! Good luck for the paed appt tomorrow!!

  11. #83
    Debbie Lee Guest

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    Awwww... hope Felix is feeling better. Isn't he such a little battler by trying to eat anyway?!

  12. #84
    katanya Guest

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    Well Felix is okay now, he had no tube for the weekend as he pulled it out last thursday and then they couldn't get it back in without causing major damage (I don't want to tell exact details but there was lots of blood and snot) so I said we should leave it for the weekend to give him a cahnce to heal..

    He has only gained 200 grams so far..last tube he gained 1 kg in that time..but he has been sick..anyhow he has been amazing with the tube, handles it SOOO much better than last time, only pulled at the once he removed it.. he's such a champion, and will actually sit still while I change the dressings..

    Anyhow it's not the drama it was last time (especially as I'm not pumping this time, I think that makes a huge difference as much as it was something I wanted to do then)

  13. #85

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    That must be such a relief for you to see him a bit more accepting of the whole tube thing this time round. Sorry you had that incident with him pulling it out.... that must have been hard for both of you. And hooray for 200 grams! Big high fives for Felix

  14. #86
    katanya Guest

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    Well just a little update here on Felix..no pulling of tubes, but he has been sick this week and coughing at night which makes him vomit.. Saturday night he vomited 3 times at midnight and 3 times in the morning..Sunday night his tube was blocked so no feed that night..so Monday I ring the Pead outpatients to arrange to see his Pead (lost his mobile # damn) I get told to go through emergency..

    Of course 3 hours later the tube is pulled out by Pead's nurses and mucus was blocking it..and we solved the reason why it has been difficult to get it down, the little mite has learnt to block the tube wih his tongue 8-[ and that's why there's been so much trouble previously!

    Anyhow turns out the vomiting thing is normal when they are sick and we just have to put with it (been vomiting all week) good news is it's stopped this morning and he's keep everything down!

    Didn't get a weight in but I know he's starting to gain weight..will be interesting to see how far he's got next week and whether it comes out or not! Unfortunately I think it's be in awhile longer

  15. #87

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    clever little guy stopping the tube going down!

    hope he is better soon & then putting on heaps of weight

  16. #88
    katanya Guest

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    Damn, damn, damn..he pulled it last night..I woke up this mornig and thought I'd dreamt it ..off to the hospital again we go..

  17. #89

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    Oh Katanya... hope today looks up for you and that you're seen at the hospital in record time.

  18. #90
    katanya Guest

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    Oh we didn't have a good time getting the tube in! *WARNING*there is gross stuff ahead!

    When I got there there was a male student nurse who was going to have a go, I suggested that he might not like to try on Felix because he was difficult at the bast of times, so thankfully they didn't push it..

    For a start he is full of mucus ATM..and getting the tube in was harder..then either the tube pushed the mucus into his throat and lungs or the tube went down the wrong way, but he went purple and couldn't breathe and couldn't even cry..it was SOOO scarey..I was saying" he can't breathe take it out!" and the nurse didn't want to pull it up because she'd had much trouble getting it down there..so they sat him up it was really horrible 8-[ anyhow it passed and they got it down..the student nurse looked ready to pass out as Felix vomited up some lovely blood and mucus.. so I said" I bet you're glad you didn't do his tube?" to the student nurse, to which he nodded enthusiastically....

    Poor liitle guy..but soon after he perked up and hopped the floor and smiled & waved to all the nurses as we left..sometimes I have no idea where my son gets his amazing personality from..he's just such a trooper!

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