Felix's Chronic Interstatial Pneumonitis

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:

Ohh poor Felix! Hope he gets better soon.

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

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

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)

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 :D

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

clever little guy stopping the tube going down!

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

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..:(

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

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!

I am sooooo impressed with your little man. It's a lot to handle, but he's doing it with such strength of character. Well done both of you.

I think you are right Shannon..felix has no fear of the actually hospital, but as soon as he's hits the treatment room he starts to cry..it's also the nurses uniforms that scare him, as the poor nurses are the one who do the yuk stuff not the doctors..

I did feel bit faint when I left the hospital today..find again now..I can handle the expected.. just the unexpected is not good..

Poor little mite at having the tube put in again... and what a traumatic one it was,.. but WOW at how well he handles it all, what a little champion!! :D And you are too Katanya!!

I just have to agree with what the others have said, you are amazing katanya!! I know you didn't "choose" to have to go through this, but your strength is inspiring to me. And your little man is a trooper!! What a great guy he is!

Christy..like I've said before..not really amazing, just used to the things my boy requires..and I haven't always coped so well..but thanks anyhow :D

Update on Felix's tube..

unfortunately despite all good efforts he hasn't agined enough yet.. (only 400 grams in 6 weeks) which sound like a lot but he was thought to gain 2.5 kilos in this time..so the tube stays..

Well we are used to it and he's not losing weight which is a positive..he's still breatsfeeding and he's happy so fingers crossed his chest clears up and we can get the weight on before december and have it out before Christmas [-o<

bummer he didn't put on as much weight as they wanted but at least he has put on some - hopefully felix will love eating christmas goodies (like the rest of us) & pile on the weight \:D/

How are things going Katanya?? I haven't seen you around much lately... so I hope everything is ok with little Felix, and he is continuing to gain well...

Thinking of you both!

*hugs*

Oh Ambah I just had the same thought as you.... how are you both going Katanya?

Hey guys everything is good with Felix..I just have been super busy this week..and I have a new obsession of knitting wool soakers 8-[

Felix is still having trouble gaining weight and vomiting in the morning..I have had to rig up a cooling pack over the Pedisure bottle because it has been so hot that I'm worried the milk has been going off and not helping with the vomiting :( This morning he still vomited even with the cooled milk, but not as much which is something..

He has been AMAZING with the tube, he has had it on for 2 months and only pulled it once \:D/ which for a toddler is just incrediable I think..so as much as it's annoying it is also managable..the most annoying fact is that it restricts his water activity..so no swimming lessons till it comes out :(

Anyhow we are menat to be going up to see his specialist soon..haven't got a date yet..I've been postponing as he's been unwell for 3 months ..but his pead wants him to go for the sleep study..

Katanya, great to hear things are good with Felix apart from the vomiting etc. Fantastic that he's going so well with the tube! What a trooper! Does it look like he might be able to have the tube out by Christmas?

Take care.

Okay Katanya I was going to ask what wool soakers were but I looked at Felix's website & it explains it all 8-[

You sound like you are doing an amazing job & it is funny how once you become a mum you find yourself being able to do stuff for your kids that once you thought you would never be able to do. You are such an amazing woman.

I hope that Felix is still feeding well & that all goes well & the tube can come out before Christmas. Hope that his vomiting after a feed settles down soon & maybe the cooler milk is working in this area a little???

Hope all things continue to improve with your wonderful little man & that really soon we see a post letting us know that his tube is out.

Glad to hear Felix is doing well!

Thanks guys for your well wishes..HOPEFULLY [-o< the tube can come out over christmas..would be nicer for photos etc..anyhow we are lucky this technology exists..otherwise he would have faded away by now 8-[

Katanya good to hear the happy boy is still travelling along nicely. What a champion he is!

Last night his tube got blocked and I had to go in to hospital to get it replaced..it was so upsetting as he never pulls it out and he was so upset having it changed..He just looked at me when they went to do it as if to say "Mum why are you letting them do this to me?" :( or that's how it felt..not a good morning..

Oh poor little mite! Huge hugs to both of you, Katanya. I hope the process of getting the new tube in went as smoothly as possible.

Thanks Angel :)

Well some good news..he has gained over 500 grams since last weigh in :D and if things continue the tube will come out after next appointment..in time for Xmas.. \:D/ he's now 9.7 kilos..so this is great!

Wow!!!!! That's great news Katanya. I hope you get your Christmas wish :D

Oh Katanya- i just read through poor Felix's whole thread and i cant stop thinking ho brave you and your little man are.

Great work for the weight gain Felix :)

Fingers crossed for Christmas being tube free

That's fantastic news, Katanya!! :D

Wonderful news Katanya \:D/

katanya great news about felix's weight gain. i hope everything is still ok i haven't seen you posting, maybe you are elsewhere in bb land!

love beckles

Katanya that is great news about Felix's weight gain. Hope he gets his tube taken out at his next appt.

THE TUBE IS OUT :) we are being reviewed after christmas :)..despite no real gain since 11 days ago, the pead (not his usual thought we should give it a go out..so he's the grand ole total of 9.7 which is a kilo heavier than 3 months ago..still petite but SOO much healthier looking :)

thanks for all the good vibes everyone, must have helped :)

YAY for Felix!!! That is wonderful news Katanya!!! 1kg gain is still heaps though!! =D>
Hopefully all of the yummy christmas food will help him fatten up more too! :D

(ps. pretty please come and chat with me in the new Babies Born in May 04 thread, cause I'm the only one there atm!!)

Wooo hoooo for Felix! Way to go little man!
Hope he manages to stack on even more weight and he never has to have that tube ever again!

I'm SO happy for you & Felix, Katanya! That's fantastic news!

I hope you both have an absolutely awesome Christmas :D

Felix recently had a sleep study up at the Royal Childrens Hospital this week, testing his oxygen levels at night (he is prescribed 0.5 litres an hours overnight currently)

IT was a bit of a drama, as we stayed in the Lodge near the hospital so we wouldn't have to saty in the ward (was happy about that ) but they didn't tell us we needed to bring our own oxygen cylinders (I thoughtit's a hospital facility they have it there??) so took awhile to organise that..then we needed a chest Xray and Felix got lost in the X-ray waiting area (locked him self into a cupboard) and then it was a big drama getting Felix and all the oximeter, oxygen, luggage etc into the lodge room..and it was meant to save us a the hassle of driving up and back to the Coast..

Next time we are going to have the oximeter dropped off down here on the Coast and then only one trip to take it back up..and can have our own bed and oxygen yay!

Anyhow the good news is Felix's specialist, Dr Francis, is very happy with him..he has managed to get through the virus ladden winter (and summer!) with little infection and increase in his pneumonitis, but it has taken a toll on his weight..
His chest X-ray shows only minor inflammation on the area where the biopsy was conducted and hasn't gotten worse..

His oxygen levels overnight weren't fabulous and the plan was meant to be to reduce the level to 0.25 and gradually wean him..however due to the cough he will stay on 0.5 till feb and another sleep study..at home!

Anyhow so the news is good so far and his condition isn't decreasing so this is wonderful for us..

ALSO on the good news front..this week (was planning on writting a pst earlier but didn't want to count chickens) he has eaten 3 meals a day all week, and at dinner he has eaten up to 10 pieces of food ..this is unheard of for him and he is really getting to eat what is needed to gain weight naturally..

SOOO..alll we need now with this good news is to have him gain the weight naturally and not have the NGT tube back!@!! We have an appointment on the 13 th of Jan and I am hoping that with Christmas we can get a gain by then so we wont get the tube back in and we can start Swimming lessons at last! (we just dot want another loss )

Ay least we get Xmas with out the NGT..next one we want no oxygen!

Katanya that's great! I had a little giggle about Felix's adventure in the cupboard (although you must have been very worried at the time!)

Hope you two had a great day yesterday :lol: