I feel abit trite posting this in here when Jessalyn's in hospital after such a serious operation..but I wanted to update on felix's sitution too, which is pretty good ATM..
We had a specialist appointment yesterday at the RCH, with Dr Francis.
He still has his inflammation (crackles) in his lungs, they have moved around, but are mild ATM which is great.
He still has some recession and increased breathing rate. Dr francis said the in the next 4-6 mths I may notice him becoming breathless when he exurts himself physically. He will either stop himself or I may need to sit himdown and let him recatch his breath (it will just look like over exurtion)
The good news is being phyisically fit will be good for him, so he can play all sport including going back to swimming in the summer!!
WE are down on the waiting list for a sleep study in the next 4 weeks which will be to record his oxygen levels overnight and see what is happening whether he needs to be on .5 litres or can drop down to .25 litres..or not at all (which would be cool)
Talked about the sleep apoenia and he took it more seriously and said he has large tonsils that obstruct his breathing, it is not connected to his chest problmes, but he's going to keep an eye on it.. hbecause Felix snores too..
The decison not to medicate still stands while he is going well, he has a minor cough which hasn't developed so it is great that it has't gone further..
Anyhow so very good, now all we need is a weight gain (I don't count the scales in brisbane because they are grossly different to our base scales at the GC hospital) and we'll be cruising!!
Katanya its great things are progressing well. Did his paed say the cough could be related to his respiratory condition? It is very common for CF'ers to have a cough, in fact a cough is encourage, as it helps move the mucus. And definitely loads of exercise. One of the best things we were told was to get them on to a wind instrument (of course thats if they like it). Also when he is in the bath, try using toys that he has to blow into. Things where he can blow bubbles in the water. Its great for helping to open up the lungs. Just thought you may like to give them a go
That's really interesting about the wind instruments Lara. Hmm, so will it be clarinet, tuba, saxophone, lol. Better start saving up Katanya, they're expensive!
LOL no recorders here too ](*,)..perhaps a saxaphone..he is actually very into music..no I never heard that about the wind instruments..makes sense for increasing the lung capacity! I love the bath toy idea! He LOVES putting things into his mouth..bubble blowers would be fun!
No the cough is probably just a tempory thing he doesn't usually have it, I get bronchitis too (10 guesses where the weak lungs come from ) If it turns phlemy then I have to get antibiotics, but right now it's still dry..
that is terrific news katanya, so good to hear. Hope fully the weight gain continues. I love the sax, hopefully he is good at it and can avoid the squeaks LOL.
Cheers Michelle
LOL Shannon I had just finished reading about Jess and then just felt like I had nothing to worry about..I know that we are all on our own journey and there is always someone worse off at anytime..anyhow still rambled on didn't I lol?
Well I do actually have something to say today, Felix had his needles delayed due to his chest playing up again..the tonsilitis when south after all, and the antibiotics aren't doing a heap, his new GP wants to put him on a stronger lot if things don't improve by monday.. as I said to you Shannon I hate antibiotics..his poos are feral ATM..runny and horrible..the antibiotics mess his tummy up..I hve some acidopholis there I have been trying to give him, but I'll have to step it up..
He is also starting childcare next week, I am actually feel a bit aprehensive because I am scared of wat he'll be exposed (illness wise)with all the other kids, there are only 8 in his room, but I just hope we aren't going to end up worse off putting him in for a day..I guess I can only try..? He goes to playgroup now?
Hope childcare is an enjoyable experience for your little man. He has come such a long way and I can understand why you'd be worried about bugs because even kids with no health problems seem to get everything once they start mixing big time with others.
Pity about the effect too that the antibiotics have on him. It sounds like you are doing everything you can to help him with the acidophilus so I hope it helps a bit. Also hope that the infection clears up soon.
How is Felix doing now Katanya? Any improve since yesterday?
I can see why you are worried about putting him in childcare what with all of the bugs that get passed on. A group of 8 isn't really that big at all compared to some places, so I will that it isn't too bad there at all...
Felix's Chronic Interstatial Pneumonitis
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) If it turns phlemy then I have to get antibiotics, but right now it's still dry..
as I said to you Shannon I hate antibiotics..his poos are feral ATM..runny and horrible..the antibiotics mess his tummy up..I hve some acidopholis there I have been trying to give him, but I'll have to step it up..
that it isn't too bad there at all...
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