How to explain to nearly 4 year old that baby brother might not come home from hospital and how to deal with emergency situations when he is around

[southcoaster]

This is going to be a long post, I apologise in advance but DH and I are a bit at a loss so I thought I'd try and
find some answers here.

DS1 is 4 in April. DS2 was born last February at 27 weeks weighing 900g. He came home after having spent 5 1/2 months in NICU. He has Chronic Lung Disorder, is oxygen dependent and tube fed as he has problems swallowing. Whilst being in NICU he had pneumonia, collapsed lungs, respiratory infections and has been intubated a total of 4 times.

He was also oxygen deprived at birth and whilst an MRI scan of his brain done at 5 months came back as normal, he has several neurological issues: now at 10 months still hasn't smiled, problems making eye contact, severe developmental delay etc. He came home to us in August, was readmitted early September with Bronchiolitis and early October with respiratory infection. On Christmas Eve he was admitted again with Bronchiolitis and pneumonia, transferred to PICU in the evening and intubated for the fifth time on Christmas morning. He was on ventilator for seven days and came home this afternoon. The recent trauma has further deteriorated his developmental delay and his neurological problems. He has had a few apneas in the last 24 hours but we have brought him home from the hospital because we (and our doctors) think that he simply cannot endure anymore aggressive and invasive treatments and procedures.

This all started whilst we were abroad in February and we decided to stay here as we had about moving here anyway. But to say that the last 10 months have been a complete nightmare and we emotionally and physically worn out, especially after these last 10 days.

DS1 has taken everything in his stride. He is a very happy and sensitive boy who loves his brother. He has been quite upset in the last two weeks when during his school holidays he is passed from parent to parent as we try to be with both boys.

How do we explain to DS1 if next time DS2 doesn't make it through and doesnt come home from hospital? Also if an emergency situation arises at home with DS2, how do you deal with other children?

DH and I have come to terms with the fact that DS2 might not always be with us (as much as you can come to terms with that) but I feel so incredibly sorry if DS1 loses his brother. Is there any way we can prepare him for this?

Thank you for making it so far.

I don't have experience of a situation such as yours, but I just wanted to say sorry you are having such a terrible time.

Have you sought advice from the hospital in preparing your DS1? I imagine children's hospices would be a mine of information on this subject. Can you contact the nearest one to you and talk to someone?

I hope someone can help you on here

I'm sorry to hear what you're going through.

Winston's Wish have a good website with advice and suggestions for books and other resources for helping a child to deal with this sort of situation.

I'll try to do a link here - fingers crossed.

So sorry you are having to go through such a difficult situation. I would have to agree that children's hospice would seem a good starting point for more information for you.

We had a different relative who had a long term illness, with a high chance of sudden death, and so I had a similar conversation with ds1 some years back. I'm really sorry your family is going through this. There is very good advice above, and winston's wish really are fab.

I was quite concrete and explicit when talking to ds and it looks very bald when written down, so I've linked it in a new thread rather than posting here

Our elder son was younger and our younger son is now 12 but we were always honest and open about it all and our elder son always seemed to cope - better than us sometimes - we do have access to the local hospice which is fab and I think you should contact them urgently - most you can self refer - they have excellent counselling for the whole family and are lovely places - not at all what you think if you haven't been.

Thanks everyone for the really good advice. We are in Spain and there aren't any hospices around here. I think here everything is very much family centred. We are planning a move to Dublin to be closer to family in the next 4-6 weeks, where we will also be able to get some respite help, again something which isn't available here. But I've done some reading on the Winston's wish website, there seems to be really good info and advice on books etc. so I'll try and read a bit more there in the next couple of days.

Mariemagdalena thanks also for your other post, it does sound bleak but I think it's a very good and sensible way of preparing children.

The thing with DS2 is that he is now recovering from the bronchiollitis and pneumonia, this was at the height of the flu season (even though he's had the RSV jab) and he might just be fine now or not need aggressive treatment if he gets ill again. The apneas are new and more scary, he's connected to a pulseoxymetre so we can see when he has one, I am just praying that this is a reaction to the recent trauma and that they will stop in a few days.

Again thanks for all your advice.

maryz, yes we are already in touch with them and have spoken to a nurse who will be helping us as soon as we arrive.

southcoaster, presume he has had this year's flu/swine flu jab, and also 2 doses of pneumococcal imm (prevenar). If not, get them asap, as soon as he begins to improve

Hi Southcoaster, I am sorry I can´t remember if you speak spanish. Have you heard of AMAPPACE (Asociación Malagueñas de Padres de Personas con Parálisis Cerebral) in Malaga. Even if your son hasnt got CP they are lovely people and may be able to help.

i am so sorry you are going through this x

mariamagdalena, yes he has had all the jabs, except swine flu.

Isw, do you know if they do swine flu jab here? You know it's weird because I often drive past the office of that association on my way home from the hospital, although it always looked closed. Will stop next time, thanks for tip.

Hi

Sounds odd but the BLISS website may well have exactly what you are looking and if not their forums are very good apparently.

this year's flu jab (at least in UK) includes swine flu

when dd2 was tiny and in and out of hospital, it was always dd1 that made me cry. she was so proud of her baby sister.
no real advice, fortunately we didn't have to deal with the 'what-if' scenario, but wanted to send you healthy and strong vibes and good luck for your move x

Last year we had seperate jabs for swine flu and normal flu (both in 2 doses for dd as she was under 2) this year we only had the flu jab because the seperate swine one isn´t available - i think they are combined here also. We both only had one jab because she is over 2. We are doing her 3 yr jabs and second chicken pox on tue, i can double check if you like. I am so sorry you are going through this.

DayShiftDoris yes I spent quite a bit of time on the BLISS website and forum, will have another look again.

Whilst we thought DS2 was recovering, he got worse again yesterday and we're back in hospital, and all the medical staff that know him don't really see a long term chance for him with the constant aggressive treatments and interventions he would require. DH had a chance to look at the Winston's Wish website and did some drawings with DS1 today which DS then brought and explained to me - you just forget how matter of fact children can be about these things, which is good in these situations.

Isw, not sure if you know the Cudeca charity here in Malaga, they deal mainly with cancer patients but apparently also other illnesses so we will get in touch with them.

Thanks again everyone, really appreciate it.

Sorry to hear that ds2 is back in hospital again. hope the following story helps.
My dd was born prematurely at 27 weeks and in the next incubator at NICU was a little boy born at 26 weeks and we used to chat to them a lot for mutual support.
One day when we arrived at the hospital we discovered that their ds had been moved into a side room as all the doctors were convinced he was going to die - his only hope was an experimental treatment so they prepared for the worst and we prayed for a miracle. Although the chance was very small he recovered and we were amazed ! (He does have long-term disabilities.)
We found that when my dd was in hospital many doctors do give the worst case scenario as they don't want to give an unrealistic impression of what they can do but often there is a best case scenario too.

crazymum53 thank you for sharing your story, I really appreciate it.

Many times in the last 11 months we had been given worst case scenarios and we hoped and prayed and he pulled through, so I do know that miracles can happen. Unfortunately we are now further down the line and whilst all the while doctors have been optimistic that he could recover it is now unlikely, and the neurological problems present now will severely compromise his quality of life in the future, and DH and I have to be realistic about this.. There is no unusual treatment that they could now try on him, it is rather the opposite - too much has been tried in the hope it would work. But thank you again x