Tracheomalacia Treatments

[hldeskin]

My 6 month old daughter is in the process of being diagnosed with Tracheomalacia.  She's schedualled for a broncoscopy in a few weeks but right now she has a terrible cold.  She has a lot of phlem in her airways and having a hard time working it out.  She's using a nebulizer with albuteral (i'm not sure how thats spelled) three times a day and it only helps for about an hour.  We're getting tired of rushing her to the hospital every couple of nights.  Are there any other things we can do to help her?  Would drinking water help?  She's especially bad after she eats or when she's playing.  

[MsJenn77]

my son is 8 and has it. was wondering if maybe you found a solution?

[leannekendrick]

hello my 7 year old son has just been diagnosed with tracheomalacia and his lungs r 1/3 full of infection, he on a long line and has to go to hospital everyday for treatment with anti biotics but all i keep reading on the net is they will grow out of it my 24months but he hasnt any ideas of what happends next?

thanks leanne x

[daveandjulie123]

Hi there, thanks for the messege, please read my sons profile below, would be good to communicate about his tracheomalacia in particular. incase you cant remeber i contacted you but the messege had disspeared.

Tnanks hunters mum

My little boy has been through a great ordeal in the last 6 months, he is 19
months old now, until 6 months ago perfectly normal, what is normal I dont think
there is such a thing.... He suffered a croup attack which left him in ICU for a
week, during this stay the hospital during a tube change didnt have the correct
people there and his tube blocked with secretions, cardiac arrest for 6 minutes,
wham bam brain damage. We were told that looking at scans he would never
respond, see, hear, move, feed nothing... he may not even pull through. he lost
his ability to do EVERYTHING

Over the next 5 months he continued to amaze doctors and is now doing so well to
look at him you wouldnt tell, he has had a recent MRI and the damage that
remains is the basil gangalia which controls among other things speech, balance,
co ordination. My son has regained most things, such as Muscle tone after sever
spaciticity is normal, feeding the NG tube is out and oral feedding although
challanging is ok, until recently but will come onto that later... he can move
all his limbs, pick up objects with his feet and his hands, roll over from his
back to his front and prop up and recently hes started to sit up but we have to
put him in that position, he cant yet go from laying to sitting on his own, he
is so eager and determed to do anything. he has started to pick things up can do
shape sorters and from his nuero aseesment is a very bright boy.

They think it will be his balance that will make it difficult to walk but only
time will tell, at present its the walking/crawling/talking that hes stopped
doing and i am wanting to hear from people where the outlook has been not very
promising and the child has inspired everyone and just done all those things
that the docs said they never would, most of his brain has repaired but is the
basil ganglia more difficult.

to the recent stuff, they have recently found that he has a heart condition, yes
thats right as if we hadnt been through enough he has/had a vascular ring
(double aortic arch) he has just had major heart surgery and that was 3 weeks
ago. all went well and hes home now but has been left with tracheomalacia which
may take a little while to go (1/2 years) until this point we are suseptable to
colds/viruses etc which he has a cold now and its very scary. since his heart
operation he wont swallow solids but is ok with fluids which is bizzare, maybe
the virus he has right now is making it tough.

anyway, thankyou for reading, we are a genuine family based in nottinghamshire,
england and would really like to make contact with parents of other brain
injured children

[daveandjulie123]

Hi There, please could you make contact. My son is 18 months old and has been through hell and back. Brain damage, ICU stays, Double sortic arch/vascular ring surgery which has left him with tracheomalacia. his brain is recovering really well and the only issues hes hopefully going to have is mobility. he can move all his limbs and is very co ordinated but has not much balance so may not walk.

Re overing well from heart surgery but is off his solids at minute its been 3 weeks now, swallowing liquids ok at present though, his breathing sounds awful though, still has stridor and really ruttly in upper airway. went to docs today and prescribed ipratutriopen sorry bad spelling... sats are always good and breathing rate good are you going through something similar

[kaylapearson]

Our son was born with e.a and tracheomalacia and a couple other malacias. I have a web site that gets into detail that might help you out alot. Its kaylapearson.com and tracheomalacia.org Our son sounds bad after he eats also and especially when he gets excited our starts talking,the more they try and work to catch there breathe the harder it is for them, our son is diagnosed with 75% tracheomalacia  he also has 50% bronchomalacia and larangomalacia. I hope this is of some help to you god bless