Felix's Chronic Interstatial Pneumonitis

thanks guys, the GP is onlyfairly new to him but a fantatsic doctor he has told me I can just turn up at the sugery without an appointment and he'll see him..which saves us SOO much time and energy rather than going to hospital all the time..

He was a little concerned about whether to administer antibiotics or not, because he doesn't want him to build up an immunity to them, he siad his chest is very wet but not infected, so he wants to wait and see..but he told me if he worsened to turn up at the surgery tomorrow morning..

Felix beenplaying today so still up and about during the day..anyhow he's gfighting off infection which is great...go breastmilk ;)

Wow what a great GP! Glad to hear Felix has been well enough to play. Hope he's been okay today.

Well today he has turned the corner, definately getting better not worse, I am so happy we didn't go with the antibiotics..he even went to childcare for a few hours while I had my hair cut and she said he was fine!

He is so good today I can't believe it, it's as if he's just throw the bug off! Kidas are incrediabkle creatures, he never milks the attention from being sick for a second..

Good to hear Felix is better Katanya. Now stay away bugs!!!!!!!

Katanya that is great news that Felix has shaken his bug off so easily!! Must be a huge relief...

and Woohoo for a new haricut! :)

Katanya his immune system must be getting better if he has given that virus the boot so quickly. That's great!

Unfortunately he's still waking up crying with his coughing, he actually tried to sleep sitting up crossed legged last night it was kind of cute if it wasn't sad..I ended up sleeping him across my stomach..so he was elevated..

I am so happy his immune system has beaten this so well, lets just hope it can keep up..I wish he would a bit more because it's really taking it toll on his weight but I have to let him body do it's own thing..

My breast were leaking after him getting better yesterday because he was feeding so much while he was sick..I had to beg him to drain one because it was so swollen and full I thought I'd get mastitis 8-[ I am kind in shock that even at 15 months my breasts could contain so much milk

Awww... poor little Felix trying to sleep sitting up.
How is he this week, Katanya? Any better?

Sorry to hear Felix has been so sick Katanya. Hope he's still on the improve, & the new GP sounds good.

Shannon you read my mind 8-[ I've noticed your absence too, and I'm hoping it's just because you're having a bit of R and R down there on the mountain top.

Trust all's well with your little hero.

no we went to sydney for 4 days..nice to know I was missed..a rather awful time down there health wise but will post more later

Awww... sorry to hear that, Katanya. :hugs:

Just popping back in to say that when we got to Sydney, he was great, had a great flight, great first day and then that night was just beside himself, crying all through the night, and the next morning wouldn't feed, and just cried, looked in his mouth and he had all these white ulcers in there..my friend drove us to Manly where I showed the chemist, he wanted him to see a Doctor because he was also breathing heavily (of course I was less concerned because that's more normal for him) so we managed to get into a local clinic straight away..

Turns out a nasty case of oral thrush..got drops for his mouth and though he was still not that great had a reasonable rest of the day..went for a beach walk and he and my friends son played in the sand..

That night lots of night waking and crying..had to give him drops through night..
Went to Manly walking around and had a good day till we went back to her house..he had a sleep and woke up screaming, looked in nappy, had a bad rash, put him in the bath, more screaming..so we bundled him back up and took him back to the doctor..turns out thrush went to his bottom..more cream prescribed, then worried that my friends baby would contract it.. as you can imagine I was EXHAUSTED at this point, from all this and having to tell him not touch anything at their apartment, and not to share toys with my friends baby.(bought op shop toys so he could play with them)

It was great seeing my friend and her son, but ot we were so glad to get home, since he got home he has inproved in everything out of sight..his breathing isn't great still but no infections at least..he's eating again, lets home we can catch him so he can have a decent weigh in thsi friday [-o<

oh no! Poor Felix at thrush!!!

[-o< I hope all goes good on Friday.... *fingers crossed for weight gain!!*

Oh dear! Poor Felix! And poor Mummy! You must be exhausted!
I hope he can catch up and put on some more weight.

Poor little guy! What a rough time he's had! Glad to hear Felix has improved though.

Al the best for Friday.

Bummer Katanya! Glad Felix is doing better now he is at home.

It's a shame you didn't get to relax much. Hope Felix is feeling better today, and more like stuffing himself senseless with lots of nutritious, fattening food :eat:

How are you holding up? Did you get thrush too? (owwwww)

I have been using canesten and eating acidophilous, bit of redness around the nipples but nothing serious..

I took him to the GP today and he said everything is sounds so much better, he is still having rapid breathing episodes, but his chest has cleared heaps.

Now I just have to get him built up again..it's a never ending battle!!

Yay for Felix's chest clearing up!
:hugs: you are doing a great job!

*Sigh* some more bad news I'm afraid..

Dietician vist this morning ..weighed on our base scales..8.7 kgs..he's lost 400grams since 6 weeks ago and is now WAYYY off the chart lower that ever before..I knew t wasn't to be be great news since I can feel all his bones again, and his entire rib cage s visable not just side ribs and back bone etc..

The pead will ring me on Monday as much as I detest the ghastly thing, I will be not questioning the NGT if suggested again, it scares the life out of me if he got sick again..

I really feel numb about it, I know it isn't my fault but I just wish there was something more I could do..the worst part is he was eating well before getting sick and it's just been one thing on top of the other..

Problem is with his current intake the dietician says that it would be fairly impossible to catch him up to his tenth percentile again without the tube..

So will see on monday but I am fairly sure it will be the NGT back in again..

yeah shannon he's less likly to keep getting sick now warmer weather is here, but he has trouble gaining weight in a normal way anyhow..

last NGT he gained 1.5 kgs in a month, then lost 500 grams of it..but if he hadn't have had that we would be in a worse situation..before this week I was going tell them no way not again..

I HATE the NGT because he pulls it out and having it put back in is the worst kind of torture..I think this time I am going to learn how to reinsert it myself if it goes ahead, as the hospital trips and nurses holding him down are the worst thing of all :(

I know what the Paed's going to say because was already unhappy with him being on the 10th percentile when he was born on the 50th and was 90th etc when he was younger..now we are completely off the hospital charts which are different to the ones in the back of the health books..he's been of that chart for ages anyhow

Oh those NG tubes are horrible. Like Jessalyn, Kynan had one in for a few days when he was a newborn. I can't imagine how difficult it would be for a bub Felix's age!

Sending lots of weight gain vibes!!

Hugs.

:hug: I know the tube sucks *hugs*

Katanya sorry to hear that news. I hope you and the paed can work out a not-too-invasive plan of action to get Felix back on the weight-gain track.

Awwww... Katanya... I am so sorry... gosh... the poor little mite. :hugs: Good on you for wanting to learn how to insert the tube yourself. Being held down by nurses has got to be scary for Felix.
I'll chuck in some weight-gain vibes too. Goodness knows I have plenty to spare ;)

Oh Katanya, I'm really sorry to hear that things arent going so well atm... .
I hope they are able to teach you how to insert the tube yourself, and hopefully that will make it a little easier on both you and Felix.
I hope everything goes well when speaking with the Paed on Monday.
Sending all of my love to you and Felix. :hug:

thanks everyone for the fattening vibes and thoughts, it's so ironic really because I have just started a weight loss program too..I would gladly hand over a kilo or 2..it's really an eye opener to me about weight issue for the chronically underweight..

Dp and I discussed my idea of being able to insert it and he thinks it's a bad idea because Fleix will distrust me instead of distrusting the nurses...I don't know I just don't know whether it would be better for him to have me do it or a nurse..

Hi Katanya. Sending more fattening up vibes for Felix. So sorry he needs the tube again, but it does the trick doesn't it. It's a tricky one about whether you should learn to insert it yourself. I'd find it really hard, but I can see it being a good idea to be able to. Anything that makes things easier for him I suppose.

I see you've got a new website for Felix, it looks great!

Big hugs for you, it must be so hard. You're doing great & it's easy to see what a wonderful mum you are.

sorry to hear felix has to have a tube in - hopefully he will put on the weight quickly & won't have to have it in long - sending heaps of get fat vibes

Well talked to Felix's pead today on the phone, and yes we will be going ahead with the NGT, his wish is to try to get him up to a weight to equal his height line and see if he can maintain it..

I'm not sure we need to go that far, I just want to get him looking healthy again..the 10th percentile where he was sitting happily would make me very happy again..not just below the 50th which is where his height is..if that was the case they are aiming for 11 kilos 8-[ which means to get him there we are talking a gain of 2.3 kilos..which will mean the tube will be in longer 8-[

I don't know, I just my argument always is that the Tube is so artificial and doesn't help him gain the weight himself..it's of course different when he is severly underweight like now..

Yeah I think I will this time, since we live half an hour away from the hospital and it means taking him in there when it suits them and having different nurses do it (so who are great at it and others who are not so great) for his sake I think me learning will be better..I know that him being that bit older will mean better motor skils and strength and he'll be tugging on it for sure..

however for my sake I'm not sure, I might see if I can get DP to come along and learn too for the times I just can't stomach it (not sure if anyone has seen what's involved but he screams blue murder) trouble is getting a time he's not working..

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.

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,

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..

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!!

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 :)

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!

:hug:

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

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!