Chronic Lung Disease and coming home on Oxygen

[DonnaBallona]

Does anyone have any experience of this and can give me an idea of what to expect? Jude was diagnosed on Tuesday and although he's doing well in other areas, he really can't cope without the low flo and they are talking about doing a sleep study on him.

any idea what to expect? x

 

[AP]

I know Alex was still on low flow at that gestation and it was nearer due date that she came off. Sometimes an extra week is all it takes so you never know whats round the corner. The NICU generally only let babies home on oxygen if they feel that you can cope so they wouldnt have mentioned this otherwise

Sorry i dont have experience of oxygen at home though x

 

[DonnaBallona]

Ah, thanks AtomicPink! Can you remember what level Alex was on? Jude has between 0.6 and 0.3 generally. He really struggles without his oxygen and sits in the 70s without it, particulaly after feeding or when laying down- he also has terrible reflux which obviously doesnt help matters!

I like to think they realise we've done this before (most of it anyway!) but Jude has crossed bridges that Brooke never even encountered. I'm not too concerned by the oxygen at home thing, I just want to make sure I know what I'm letting myself in for-just in case!

thanks for your input so far! I'm sure Molly went home on oxygen actually; I'm hoping Embojet might be about soon too!

 

[clairec81]

Hi, slightly different situation I know but my daughter clung on to the o2 while in unit. They let her home without it and all seemed well. She had been diagnosed with a pda whilst in and at about 4 months they checked again and said all was well. She struggled to put on weight and I knew something wasn't right - cut a very long story short I managed to get an apt at York Hill and they discovered her pda was indeed open and very large. She received surgery and things improved but a few months later got rsv and was put on o2. She came home on it 24 hrs at 1L. She did really well on it and although it was daunting at the time it was ok - main issue was her running around with the wire and getting caught uo (not an issue you'll have). They dd a sleep study at York Hill and we did a few at home by recording her sats on and off during various nights and at present she's off complete;y for a trial over the winter and all being well that'll be her. Hope some of that will be helpful - I really wish she'd came home on o2 from the neo natal as (and i know this is only my opinion but...) i feel that it would have saved a lot of what happened later or at least let her first year have been less hard work for her!

 

[bumpsmum]

no direct experience Hun just wanted to let you know I've been thinking tons about Jude the Dude. I think confidence is the key to coming home on oxygen, you and Alan will have the option to bring him home or wait until he is a better gestation and managing better, I'm sure you want him home for Xmas, from personal experience the NICU has a totally diff feel on Xmas day the staff are amazing and really make a fuss, all the babies got stockings to keep filled with wee gifts and a handmade card to the parents from the babies it's not the same as having him home but if he's not ready or you don't feel confident with the oxygen there is no rush, a lot can improve over a short period of time, imagine how well he'll be doing in 4 weeks time xx

 

[DonnaBallona]

thanks for your input everyone; it's much appreciated.

Bumpsmum; I really appreciate you thinking about the dude- I'm sure you've been following my (many!) photographs on facebook-although I am choosy about how much I put on there as people don't understand and all they ever write is 'when's he home?' it can be soul destroying when they don't really know what he's going through.

anyhoo- Christmas on the unit is looking like a real possibility for us at the moment. I'm not sure how I'm going to manage with the big two at home as well- any tips? at the moment, I'm telling myself he will still be there at Christmas so that I'm not disappointed weeks down the line. his due date was December 27th anyway so its just a waiting game- and at the moment he's not ready.

xx

 

[bumpsmum]

totally get the FB thing that's all we got too esp on run up to
Xmas folk didn't get that he was still -6 weeks by then and not ready by mid dec we accepted the fact we were there over Xmas. W e made it clear to family it wasn't our 'usual' Xmas day we spent time with Matthew in the morn them the 3 of us went to visit Daniel the staff were great at sneaking Matthew away to
give us time alone with Daniel. it was tough but we agreed daniel was where he needed to be and too young to enjoy Xmas so we didn't stay as long as normal and concentrated on Matthew and us. it's still weeks away you'll know yourself of he will be ready to go home. Maybe the NICU is the best place for him with RSV season apon us with his CLD as his wee lung will still be developing.

keep positive but take time out for you and Alan and the B's too xx

 

[25weeker]

Sorry no experience of oxygen but at 35 weeks gestation my lo got a cold and had her first set of jabs. She ended up having a couple of severe brady's they put her back on cpap and on caffeine. Thankfully the cpap was only for a day but at the time it felt like a massive setback. She was on oxygen until just after 38 weeks then our neonatal said she had to be off it for a week before they would do a sleep study. She came home a couple of days before her due date.

Although to us we think a few weeks isn't long in a prem it makes a massive difference.

Hopefully someone will be along to advise on oxygen.

Xx

 

[AP]

I just checked. Alex was only 36 weeks gestation and hovering around the O2 range u mentioned. She came off O2 only 12 days before she came home.

 

[mummy to be86]

hi both my boys came home on o2 they slowly got weaned off alfie has been off it for 6months but thomas caught rsv 2 weeks ago and had to be put back on but he came off it and now has been off it for 2 weeks if you want to ask any questions please dont hesitateto contact me

 

[stick2000]

Hi, my daughter came home on 24hr oxygen, and didn't come off it till she was 15 months old (she's now 3). She has poor lungs due to a diaphragmatic hernia (she was term) and started to develop CLD due to long term ventilation from birth, she also was suffering from pulmonary hypertension.

She came gome on 0.2l, but after a bout of bronchiolitis she ended up back in hospital with increased oxygen requirements and then ended up coming home on 0.3l.

Our home oxygen kit comprised of a concentrator (machine that plugs in and generates oxygen by pulling in surrounding air - also kicks out a lot of heat so reduces your heating bill lol!) - this can have outlets upstairs and downstairs, a large cylinder as a back up, and a couple of transport cyclinders for out and about. She had weekly sats checks by the home nurses

It does sound a lot to cope with but once you've done it for a few weeks it becomes second nature.

My daughter had a sleep study done at home when she was 14 months old and it was decided that she could come off oxygen in the day, and then a few weeks later they did another home sleep study and turned the oxygen totally off. We kept the oxygen in the house for another year, just in case, then it was all taken away.

She's since had 2 operations, and both times didn't need supplementary oxygen after the GA's so all looking good. She's also had chest infections without dropping her sats!

I hope your little one is home with you very soon XX

 

[EmSmith1980]

Anya came home 4 weeks after her due date on 24hour oxygen in March 2011, set at 0.1. In April 2011 she came off day time oxygen and in June/July 2011 she came off night time oxygen. We had a big concentrator and baby ox to go out with. It was fine. A bit scary at first, but we soon got into the swing of things. We had the odd ignorant person staring ( I found this mainly to be adult females), but I grew I thick skin and shrugged the stares off. I was given the option of Anya staying in hospital until she came off oxygen if I didn't feel confident enough. But I was so desperate to get her home after a 136 day stay, I chose to bring her home. Xx

 

[TwoBumps]

Hi, I don't come into this section very often, but I saw your post and recognised you from the first time when our babies were in the NICU at about the same time!

My smaller twin Joshua was diagnosed with CLD. At the time I was told that the only reason he was diagnosed with it and not his twin, was because he was still oxygen dependent at a certain gestation (can't remember what that was now!) Anyway, Joshua was still on O2 at 36 week gestation, less than your little one, but still resolutely refusing to wean off it. Coming home on O2 was also mentioned to us, and we were told that they would give him 2 more weeks and then they would start to make the arrangements for that to happen. I remember posting on here at the time as the diagnosis of CLD scared me to death (as I made the huge mistake of googling it) as did the thought of coming home on O2.

About a week later one of the nurses suggested to the doctor that Joshua be put on dieuretics to help remove any fluid from his lungs, and lo and behold shortly afterwards he started to wean and relatively quickly too. Both boys (Ben had stayed in to wait for his brother) came home just under a week before their due date & Joshua was only off the O2 completely for 4 days before he came home.

As for the CLD, Josh is now 3 and has not suffered any breathing difficulties since coming home and so I don't think any lasting damage was done to his lung, and in any event as he has grown it has become such a small area of his lungs that it doesn't affect him, and so I scared myself quite unnecessarily with all the horror stories on google!

Jude still has plenty of time to come off the O2 before he is "term" but if he doesn't then my friend has just taken her little girl home on O2 (rather different story as she was term but had severe muconium aspiration) and she isn't finding the O2 at home to be a problem at all and the O2 canister fits comfortably under her pushchair so getting out & about is not a problem.

I hope this helps a little bit & that Jude is soon home x x