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Tracheostomy parents - advice and guidance

4 replies

HoneyBadger525 · 09/04/2023 09:57

My son has severe chronic lung disease due to pregnancy complications. He was born at 27 weeks and has been in hospital since birth. He has been intubated twice but for the majority of his life he has been on CPAP. He is nine months old and has spent around 7 of those with a CPAP mask on. As anyone who has used one will know, they are very uncomfortable, leave awful marks and sores and are essentially clamped to the face in order to deliver pressure. We have been heading towards him having a vented tracheostomy, to allow him some more freedom of movement and the ability to develop in other ways. We understand we will lose his speech, risk infection and that we still won’t be out of hospital anytime soon due to the time taken to set the community side up. We also understand that the mortality rate is high. Up until this point we have been in favour of it despite the risks to give him a better quality of life. As the surgery date approaches I’m terrified we’re doing the wrong thing. Do any trachy parents have any advice, guidance, regrets or views they could give us to reassure us or otherwise, please?

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SiouxsieSiouxStiletto · 09/04/2023 22:08

I'm so sorry that you haven't had any replies, I can't imagine what a difficult decision this is for you.

Hate you tried asking in the premature birth section as well? You might find another MNer with experience in there Flowers

HoneyBadger525 · 10/04/2023 11:57

Thank you @SiouxsieSiouxStiletto I will have a look x

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FloatingBean · 10/04/2023 14:00

Giving the thread a bump for you, OP. No advice about a trachy but I’m with you on the CPAP andBiPap masks being uncomfortable. Could you ask the hospital if there is another parent you can speak to?

HoneyBadger525 · 11/04/2023 11:33

Thank you @FloatingBean All of them here currently are non-vented so just particularly interested to hear from someone about how the portable ventilators have worked for people especially after being home and with community care etc. as that seems to be the tricky part to navigate. Not to worry, thanks for the bump x

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