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Original poster

Does your child have a Trachy in his airway ?

14 replies

maltesers · 11/02/2005 13:34

Would you like to chat to me bout the situation i have been in with my ds. He had a Trachy for ten months when he was one. He went to Great Ormond Street Hospital for tracheal reconstruction. It went really well, he is one of the best results they have had in that field. He is now four , with no trachy and really well. I know it is a rare thing for a child to have a Tracheostomy, 1 in 10,000 apparently, but maybe there is someone out there who can relate to this ?

OP posts:

Potty1 · 11/02/2005 13:40

malteser - I know of a couple of parents of children with a trachy. It must have been a really tough time for you. Did you have him home with it? One of the mums I know is in discussion with regard to getting her ds home ( he still needs ventilation) as he's been in hospital for about 5 months now.

Original poster

maltesers · 11/02/2005 13:44

If he is ventilated then it is harder to get them home, as it involves more nursing care. my ds was only ventilated after ops etc in hospital. AH ! that must be so hard for the parents you know if their child has been in that long.

OP posts:

Potty1 · 11/02/2005 13:50

Did you still have to do all the suctioning and stuff though malteser? I remember when dd was in hospital once, a little girl was admitted to the ward because her trachy had become blocked. She'd stopped breathing and it was touch and go for a while . Very scary.

Original poster

maltesers · 11/02/2005 14:46

yes had to learn to suction the tube and change it every week. We didnt get home for six weeks.

OP posts:

Potty1 · 11/02/2005 16:14

Will he have to have anything else done malteser or is he fixed? Dd has heart problems, diagnosed late after she had two heart attacks. She spent loads of time in hospital, I found it quite hard to put it behind me even though she did well after surgery.

Original poster

maltesers · 11/02/2005 16:21

no nothing else pending. he is all fixed now, but you worry, dont you that something will pop ip round the corner. Still think bout it sometimes and start to cry. The anaesthetic room always got me very upset, it never gets any easier. He has an out patient appoint. in March. Such a long way to go for it, as we live nr Southampton. How old is your dd and how is she now potty 1 ?

OP posts:

Potty1 · 11/02/2005 16:40

She's 11 now. I don't think I really 'got over it' until she was about 5. I went to see an old HV of ours who basically saved her life - I know that sounds overdramatic - but she did. She was retiring and I just went to say bye and thanks you know? I just lost it, I wept buckets, all the fears came out and I was much, much better for it.

Appointments are a bit scary - we had one just this week. We have to travel too. In the main everything is OK, a bit of increased pressure but nothing too major, they've just upped her meds a bit.

Don't be too hard on yourself for still thinking about it all.

macwoozy · 11/02/2005 18:49

I haven't a child with a trachy, but I was a child with a trachy if that counts. I also went to GOSH for operations to widen my trachea. Glad to hear your ds is fine now.

rivers · 11/02/2005 21:26

Hi Maltesers - My DD has a trachy and has had it for three and a half years. She also goes to GOS and has had the reconstruction done but unfortunately it didn't work. I am glad that your DS's op. was a success and it must be great not having the trachy anymore and specially not having to carry round the suction machine !! I would love to chat to you about this as you are right it is very rare and the only time I meet anyone in the same situation is at GOS.
Rivers.

Potty1 · 12/02/2005 08:38

Rivers/malteser - I could put you in touch with the other mums if you'd like. CAT me.

rivers · 12/02/2005 15:03

Hi Potty1 - Have sent you a message! Thanks, Rivers.

Original poster

maltesers · 13/02/2005 21:31

hi Rivers, only just got your message. been away this weekend. that is very interesting to hear your story. lovely to meet you. am amazed to hear you on hear with a child similar to how my ds was. how old is your daughter ?

OP posts:

rivers · 14/02/2005 21:21

Hi maltesers- My DD is nearly four and has had her trachy for three years and 8 months! My DD had her trachy put in as she was very premature and had a floppy airway. Did you have the single stage reconstruction done {with the stay on PICU?). It was so good to read your post and hear your DS's op was a success. I couldn't believe it when I read the title of your post as I didn't think there was anyone else on here with experience of a trachy!
Rivers.

Original poster

maltesers · 14/02/2005 22:08

hi rivers, my ds had the two stage tracheal reconstruction. He finally was canulated at 23 months after having been diagnosed with severe subglottic stenosis at 13 months. He was always a noisy breather and then got worse. Funily enough it was the day after his MMR at that age. but because he had a problem in his airway anyway i think the jab just tipped him over the age maybe. On the other hand it may have been coincidental. We say Mr David Albert ENT surgeon, very nice and clever man. We have Out Patients there at GOS 8 March. Do you hope to eventually lose yoour dd trachy.. So sorry to hear first op was not a success, its a hard road, but wishing you strength and hope, so keep me posted. Where do you live. I am in Hampshire near Southampton.

OP posts:

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