[occienne]

Hi,

I have previously posted about my DS2 who has severe trachea malacia. He is now 8 months old and we are up to hospital admission Number 7. In the last 4 months he has spent 2 weeks in ICU where he was intubated (life support) for a week and then three other 5 day stays on the ward when he has had bronchiolitis and has required oxygen. It seems to me that his episodes of bronchiolitis are never quite resolving. The days are rare when he is not coughing away and seems unwell. It is almost as if he can never really get the gunk off his chest and fully improve. During the last week at home every time he has his first breast feed of the day (anywhere between 4-6am)he immediately starts coughing and has a huge projectile vomit --I'm not sure if its his body's way of trying to clear the mucous or what?

Has anyone ever experienced issues like this? If so, I would love to hear about anything that helped. I considering trying some kind of phsio. We use a vapouriser at night and have tried elevating the cot, but DS2 moves around so much in his sleep he often ends up head on anyway.
The doctors don't really have any advice at this stage, except wait and see (which I am doing, but it is getting emotionally and physically exhausting)

Thanks for any ideas

[hayleymorton]

Caitlan had Tracheobronchomalacia, she is now three and has outgrown it thank god but she now has asthma.

With the coughing whilst feeding i presume you are having your little one sit up as much as possible when feeding. Caitlan was on oxygen at home as well which was hard, she was hospitalised many times with infections and respiratory distress.

But Caitlan was aspirating as well when feeding and had bad reflux have they mentioned this to you at all?

Has your little one had tests to see if he aspirates, may be the cause of coughing aswell as vomiting when feeding.

How does your son sleep at night, is the bed raised to help with breathing better.

We were so paranoid with caitlan about getting infections for the first 2 years of her life we rarely left the house as i was so paranoid about her getting colds etc.

Its really hard when you have a child like this and i hate when the doctors say wait and see. But truly thats the only thing you can do as their tubes strengthen with age.

With caitlan i made a daily diary of what she was like each day , like with crawling (nightmare) sleeping feeding etc.

So each time i went to see the specialist i took it with me and showed then to show them how bad she was.

All we had to do with her was wait and see, she was on oxygen at home, keep a close watch on the trachel tug and recession and if you are in any doubt whatsoever take them to hospital.

I really feel for you going through this not a great time for you or your son

Hayley

[meandmytwo]

Hi my DS 3.5 has tracheabronchial malacia, now classed as mild/moderate down graded from servere. We too had such a rough go with O2 at home, pulseoximeter, trial CPAP , many admissions, sleep apnea, pnumonia, bronchilitis, bronchial lavarges (helped with the excess fluids on the lungs) etc etc.

It's a horrible condition to nurse a sick child through. Unfortunately our DS will have this condition through out his life as his is related to a genetic condition which has only just been picked up. Before that we too were told the "wait and see" grrrrrrr

Even when he was having what they call "death spells" and regressing in his speech and gross motor skills we still got the same line and shipped around pretty much every dept at the hospital.

Thank god we now know what the cause of it all is. Ehlers Danlos Syndrome.

I know how hard it is. And I feel for you and your bub.

Only advice I can give is document everything like Haley mentioned. Ask if your child can trial a drug called Singular. It helped us greatly with the extra fluid on the lungs.

Does your child turn blue? Have mottled skin? This is the main concern which means that further investigation needs to be done.

Also ask if you can also trial a reflux med. It may help. My boy used to vomit alot as well. And yes I was told its very common with this condition.

Kerrie

[occienne]

Thanks so much for you replies.

Hayley, no one has mentioned the aspiration issue. The projectile vomiting has only started in the last week (except for when he has had colds previously). I will ask the doc about it next visit. I have tried sitting him up for feeds, but no luck. He is generally a very unsettled sleeper, especially when he is having cold/bronchiolitis symptoms which at the moment seems to be nearly always. I hear you about getting paranoid about infection. We lie very low and I try to avoid going anywhere with him which involves being indoors and among crowds (esp given the current outbreak of whooping cough). It is hard with a toddler at home too.I also find that everytime we go out with him people are staring as he is such a noisy breather and often has a very chocking cough. People are always making comments about it and I often find myself having to announce to lifts full of people or waiting rooms of people that he actually has a windpipe problem.

Hayley, was Caitlin on home oxygen all the time or just at nights, when she was unwell etc? Was it via nasal prongs, CPAP etc? We have asked the docs about doing this numerous times, but they always respond that if he needs oxygen, he needs to be in hospital. Was your specialist as respiratory pediatrician or ENT? Also can I ask why crawling was such a nightmare? DS2 is just on the verge, so maybe I need to be prepared ...sorry, so many questions!

Meandmytwo, its sounds like you have had a very rocky ride. DS2 used to have blue spells when he cried too much or was in certain positions, thankfully he hasn't had one of these for a while. I will certainly look into the Singular medication. I haven't heard of it before, has it had any side effects for your little one?

Thanks again for your feedback

[hayleymorton]

Caitlan was on oxygen at night time only, to help her sleep , the specialist same as you did not agree with her having it and also said to me if she needs oxygen bring her into hospital. I fought this and said i WANT her to have it.

LOW AND BEHOLD she slept perfectly through the night it was great, she used the nasal things, it was left on all the time during the day and only changed it every two/three days

hope that helps

Hayley

I would not take no for an answer if you feel it will help then press the subject

[Jessie01]

My DD also has Tracheomalcia (but not as severe as your son) and last year she suffered from many chest infections/broncolitis and was admitted to hospital several times.

In around october last year DD was finally diagnosed as having silent aspiration. It's amazing the difference in my daughter's health since find this out. She now has all her fluids thickened & will actually drink & has put on a little weight. (Last she she wouldn't drink much of her forumla at all). DD didn't cough etc, so its not always obvious. The speech pathologist (feedings specialist) who did our testing said DD has an uncoordinated swallow reflex. Given all the issues that seem to group together with low muscle tone, it made sense. I just wished I known earlier.

P.S. We found the ventolin inhaler (with a spacer and mask) was helpful for DD, when she had a mild cold. If it's a bad cold & her breathing is struggling, I usually go to emergency to get her oxygen levels checked and sometimes medication is used to help open up the airways. DD wasn't actually on oxygen at home, but I found my self sleeping on a Matress near her cot, so I could keep an ear out for her breathing - it was such a worrying time.

Good luck & all the best.

Oh... just another though - I think it's good to try and not let their room get too cold & to keep it above 17 degrees. Our ped. also suggested a flu immunisation.

This post has been edited by Jessie01: 17/06/2009, 10:52 PM

[occienne]

Thanks again Hayley. It is interesting that some of the deepest sleeps DS2 has had has been when he at the tail end of a hospital admission, but still on oxygen. I always wondered whether it might help with his sleeping at home. We are off to see another specialist next week for a second opinion on management, so you have motivated me to push the issue again.

Thanks Jessie01 too. Our GP recently suggested a trial of a puffer, so we are thinking about going down that track. we also sleep right next to bub at night. Its amazing how easily I wake when there is any change in his breathing patterns and how often I find myself questioning whether certain noises are ok or whether we need to be going to hospital.

hope life is going ok with you.