Questions for parents of LO with tracheostomy

[BellaCat123]

Hello,

Our LO is finally headed for discharge and coming home with a vented trachy. The nurses at the hospital are great but there are a few things I was wondering:

• do all of your children have enormous bedrooms? LO’s room is not teeny tiny probably a v small double but in between a medical cot, trolley, oxygen, arm chair for carer and equipment I am panicking that there won’t be enough space. If it really doesn’t work we will have to swap bedrooms and get bunk beds for me and hubby 😂😳

• What do you use to store suction catheters. LO needs loads of suction and hospital have the bedside canister things to keep all the caths in but I am not sure what we can use?

• What provision do you have for your waking night carers in terms of entertainment, space, facilities etc. Hospital said a chair and a lamp which is fine (providing they fit!) but is there anything else?

• All basic equipment will be provided but is there anything you have found that just makes life that little bit easier or nicer?

Basically any and all advice greatly appreciated!

Hello, never have I replied to anyone here before but just wanted to say hi, I’m a mum to a child (3.5) with a bivona tracheostomy been in 11 months now.
She has 1 to 1 carers most times as I’ve other children whom also have sn. At first she was downstairs on a blow up bed but eventually she went into room upstairs as older sibling came in with me. Basic chair in there, nothing to comfy I’ve a few who have fallen asleep ( installed a cheap WiFi camera) and dim light, I bought those plastic storage draws from Argos there compact enough for caths and noses and all the bumf that comes with her lol it’s worse than having a newborn again!!! Only forgot the box once tho!!! Anything you need to know I’m here, and congratulations on what will be an amazing journey xx

Speak to your local council about a DFG Grant. They can allow up to £30K to adapt your home for a SN child. They could add a bedroom for the child and things like an adjoining g wet room depending on need

Hello

My DD has had a tracheotomy for several months. She had sleep apnea caused by dwarfism. We had large cardboard boxes but I also ordered those plastic bags to use to keep all of her medical equipment in.
Definitely ask the council.
Having specially trained nurses at night definitely made my life so much easier. If you are able to find any. My mom used to work with folks who needed help breathing so she had experience with tracheotomies.
She helped me in the beginning as we were searching. Childcare is definitely harder to find.