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DS nearly died

(14 Posts)
ShowerGel9 Sun 29-Oct-17 12:50:21

Last week my 2 year old DS nearly died in my arms. Cut a long story short..he had a temperature all day. I slept with him that night and he woke me up at 4am in the morning having a seizure. After the seizure he wasn't breathing. I gave him CPR and it kept him going until A&E...I was told he was a very poorly boy in A&E and he went on to have another seizure. They put him into a coma/sedation as he was continuing to not breath forhimself..many blood tests and CT scans were done...all coming back clear.

Fast forward a few hours and we had been transfered to a hospital 1 hour and 20 mins away from home so he could go on the ICU Clinic.

The consultant on the ICU clinic was an Angel in disguise. He explained things to me and my husband and had an aura of capability. I asked him a question beginning with 'If he wakes up will he breath for himself' ...he answered 'When he wakes up he will'...he had all the time in the world to talk to me and my husband and his way with the nurses and other professionals was enchanting. He showed one Dr how to do something with my DS Catheritar...the Dr said 'How on earth wold you have thought of it that way?! and his reply...." You see these grey whiskers? ' and played with his beard..The Consultant leaves and we never see him again and I have got questions in my mind that I was too confused to ask him. ..

Fast forward a few more days...DS is awake and we get transfered to our local hospital on the children's ward.

we get moved in the middle of the night via ambulance (the ambalance was only available at that time) and in the morning around 9 DS starts jerking. His temp is 38. We get a Dr to look at him and this Dr observes him living in the bed. He doesn't speak great English and I can't understand what he says but what I think he said was that he has to class these jerky movement as seizure activity. They give DS two doses of medicine for seizures and move us onto the High dependency ward.
By this time I'm terrified again that my little boy is having another fit. I watch him all day very carefully and keep asking he DR of he thinks the jerks are calming down and if they was a seizure. He doesnt explain in a way that I can understand...DS is sent for a test two days after at another hospital to check for epilepsy. We have a follow up appointment apparantly in 8 weeks to discuss the results (I only know this because I made an app with my own GP when DS got discharged to try to get answers to why DS stopped breathing after the seizure...my GP didn't know)

DS was discharged from hospital after being put back on a normal ward. We are home now and we have no answers as to why this happened. Blood tests found no infection. He did have the nasel flu vaccine the day before it happened.

The reason why I wrote this thread is because I can't leave DS on his own. he's sleeping in my bed and I'm not sleeping properly. I keep having flash backs at the most random times. It can be a flash back of a phrase a Dr used or it can be very graphic of DS not breathing. It can be a noise that sounds like a hospital machine.

I'm worried about going back to work (I work with children's DS age and I just am it on the planetc atm). Work have said have next week off but then the week I am terrified of leaving ds. Any slight jerks DS has my heart is missing a beat.

What if he has another seizure and I'm not there and he stops breathing? My mum and dad are elderly and nursery might not notice. I can not see myself leaving DS until I know more...but how will I know more? wait until he has another temperature and see what happens???

I have been on the hospitals website and left a message on the answer phone of the 'Angel Doctors' answering machine to see if he can explain why he stopped breathing and wouldnthen breath...I hold no hope of a responce tho as he will be incredibly busy.

I can't go on living my life keep thinking DS is jerking and observing him so closely. it's worse at night. DS IS fine now but I'm not.

Sirzy Sun 29-Oct-17 12:55:18

Glad he is on the mend now.

Your worry is perfectly normal.

Ds nearly died coming up for 8 years ago. It has taken me until about 6 months ago to really accept how much it effected me and I have now been diagnosed with PTSD and I’m am awaiting much needed councelling.

Make sure you talk to people about how your feeling, and if necessary make a Gp appointment to discuss you. Bottling it up doesn’t help.

Good luck!

LEMtheoriginal Sun 29-Oct-17 13:01:10

I didn't want to read and run. You poor love sad I wish I had answers for you. You must be terrified but hold on to the fact that this has passed and he got through it.

I think you need to debrief. Can you access some counselling? I think you need to talk this out . You could have PTSD and talking it through will help.

When will you next see a consultant? I think you need to be assertive and insist on an appointment or you won't have any peace
Xxx

Love to you and your family

Bratsandtwats Sun 29-Oct-17 13:05:43

You posted about this on another thread didn't you? I think you need to go and see your GP as (understandably) this is effecting you deeply. Even if it is just to talk.

yawning801 Sun 29-Oct-17 13:10:48

Hand hold OP, plus cake and wine.

SheRaaarghPrincessOfPower Sun 29-Oct-17 13:13:48

I had a similar reaction after my DS was seriously ill. I bought a breathing monitor and used it for a very long time afterwards.

It never went off, but it seriously saved my sanity and meant I could sleep.

Would something like that be an option?

ShowerGel9 Sun 29-Oct-17 13:15:21

thanks everyone. I will go GP. I'm just so worried about going back to work however it will be 2.5 weeks after it happened and about 12 days out of hospital so I suppose that is a long time for someone to get their head around some thing.

FellOutOfBed2wice Sun 29-Oct-17 13:15:55

Thinking of you OP. That must have been terrifying. Sending you love and flowers

Oly5 Sun 29-Oct-17 13:17:30

Yes a breathing monitor would be a good option.. the angelcare one is good. That might give you some peace of mind. You poor thing. It could be a one-off and will never happen again though I understand your anxiety. Please try and see your GP and fingers crossed that epilepsy appt comes round v quickly xx

TheFifthKey Sun 29-Oct-17 13:20:18

Poor you - it sounds awful. I think the breathing monitor sounds like a great idea for you - maybe with a video monitor as well? It would help you sleep properly.

Sirzy Sun 29-Oct-17 13:21:49

The only issue with an anglecare style breathing monitor is that by 2 most little ones wriggle a lot and will wriggle off the pad which may lead to false alarms which may not help with any anxieties

ShowerGel9 Sun 29-Oct-17 13:36:49

DS doesn't wriggle much as he has global sealy and doesn't roll about much etc

Sirzy Sun 29-Oct-17 13:37:58

Well worth considering then.

SheRaaarghPrincessOfPower Sun 29-Oct-17 15:24:26

As long as it's on a hard surface under the mattress (rather than slats) then a monitor will pick up lack of movement, even if he had moved off the exact area. You can adjust the sensitivity as well.

The only thing you have to be careful about are the wires that come off the pad to the monitor, they need tucking or taping out the way so they're not a strangulation risk.

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