37 weeker struggling off ventilator!!!

[Daamunn11]

My lb was born on 18/9/19 and for the first 14 hours of his life was fine. He started showing signs of struggle and irritability so the midwife on the ward took him away to be checked, he got whisked down to SCBU unit and I wasn't allowed to see him for hours. When I went down to the unit with my parter he was on CPAP, feeding tube and all the monitors ect. The Dr's and nurses were pretty confused as to why he took ill so randomly as usually with diseases like RDS symptoms can be spotted much sooner after birth.. my lb was born 37+2 via elective section and weighed 7lb when born, big boy! I had steroid injections prior to surgery. He ended up being intibated the following day, when he was taken to SCBU his blood oxygen was very low about half of what it should be and Dr's now suspected brain damage. This was ruled out after sevral tough days on brain monitoring, along with heart scans ect which have all came back good. Yesterday he under went a endoscopy as when they extubated him 5 days ago he struggled and whimpered whilst arching his back and had to be given 2 adrenaline nebulizer and steroids, and was then intubated again and has been ever since. It seemed as if he had an issue with his little throat passing air into his lungs, as lung scans and tests are showing nothing alarming that would cause his inhability to breathe unaided. The last 8 days have been very difficult and I'd just like to know if any other mums have had a similar experience? The doctors not fully understanding what the issue is after sevral tests on major organs coming back fine? I don't understand why he can't breathe without the tube, he received surfactant through his ventilator tube. This helped, and they didn't think his lungs were the problem. If its not his lungs and its not his throat, what could it be! He's currently being sedated for being too active, pulling out cannulas for anti bitiocs and morphine. They put him on muscle relaxent so he's very sleepy and I find this a little unsettling and unnecessary as docrots are saying his obs, blood gas and infection markers all come back fine. He is also taking every single breath above the ventilator when not sedated and nurses said he's very well they just don't know why he can't breathe unaided!!! Sooo confused about it all!

What do the medics say? Consultant on ward rounds? Are they doing any extra tests? Can you ask for a different consultant to review him?

Where are you OP? I may possibly be able to recommend someone to ask for.

I'm so sorry to read this-my boy was born ten weeks early and required continuous oxygen for eighteen months and off/on until three years old,with a feeding tube placed at eight months. I sincerely hope the specialists can work out what is going on with your sweet little angel. Keep fighting and advocating for him and you. Get help from friends and family. Take care of yourself.

They are basically saying they don't know what's going on and it's a bit of a mystery. They suspect he is just a little undercooked, and may just need some time with trialling extubating until he is finally ready to go for it himself. Ventilator is giving him 40 breaths per minute but he is overtaking the sequence everytime when not heavily sedated which is great!! His help is being reduced every chance they get. He is awake, stable, healthy, taking full feed. Responding well to sounds and touch. All in all seems like a very healthy boy. Ward round are preparing for extubation with pre steroid medication to strengthen him. This may happen tomorrow. Lung scans have again came back fine. Meds have now been reduced as of today, he's on very low dose of morphine so he doesn't pull his ventilation tube out, and he is on rantidine incase the issue may be spurring from some sort of reflux after feeds as he has been a little bit sicky. He has just finished a second strong course of anti biotics today aswell. Secretion samples were sent away and also came back fine, they have now ruled out a surfactant protein deficiency and any lung infection which again is great news but it seems we can only rule things out and not actually get to the bottom of what's going on. They have been quite good at testing him for everything possible but he doesn't fit into any category!! His endoscopy results are fine, there is a tiny bit of inflamation in his throat due to his previous vent tube which was twice as big as the one he has now but nothing serious that would stop him from breathing himself. There have been about 3 or 4 different consultants all saying the same thing even from 2 different hospitals as we were transferred from Rah scbu to our current location queh nicu.

@EKGEMS

Eighteen months is such a crazy long time that must have been the hardest thing to watch. Did you ever get to the bottom of the issue with your baba? Such ashame 😕 friends and family have been so supportive so far I just wish we had some answers and a better plan than the long path of intubation and extubation. Thankyou 😊😊

Sorry I don’t have any advice but I hope tomorrow goes well and he manages to come off. Must be so frustrating not knowing what’s causing this xxxx

How frustrating for you OP. We spent 4 months in nicu with our well cooked 40 weeker and she was a complete mystery to drs. I found it very frustrating that drs didn’t know what the problem was.
Have they explained what the problem is? Is his airway collapsing when they extubate? (Assume not as he’s not prem). Are they going to leave him intubated to let him get stronger? Is he on oxygen now? My dd was on oxygen after we left the hospital and her development rocketed.
It sounds like he is v strong in every other way if he needs sedating to stop him pulling cannulas out :)

Oh yes he was a preemie by ten weeks so his lungs were underdeveloped (bronchopulmonarydysplasia) but this wasn't detected initially as he did so well breathing at birth. He was only on the vent once again at 8 months from RSV infection. His lungs are fine now at 19. I wish your baby the best

Just a thought hit have allergies been looked at at all?

But not hit sorry

I'm sure it's probably been tested for already but did they check for group b strep?
I hope things go well for your ds tomorrow and he keeps getting bigger and stronger!

Was there a medical reason for you or baby that you had an elective so early? That could have something to do with it. Hope your wee one is better soon. Some babies would naturally gestate longer, so it could be for him that he’s a little more prem than his gestation would suggest.

@DaisyDreaming
Thankyou very much
Steroids have been started today and extubation is planned for tomorrow morning. I have absolutley everything crossed for my boy!

@Robs20

Ahh that must have been super frustrating 😬😬 he originally had RDS which was treated, they suspect inflammation from ventilator tube which was alot bigger before and also put down in a rush. This inflammation has since went down, could have been a slight struggle followed by anxious hyperventilating. He's going to be extubated early morning, I'm so excited but also incredibly nervous as it was so hard to watch him decline fast last time. The doctors seem very positive that he wil be able tk support himself. I do too as he is physically SO strong. He can squirm onto his belly at 11 days old... He has a bit of a reputation with the lovely nurses for bej g fiesty 😊😂 he's not actually receiving any help from ventilator but it is there, he's doing all breathing on his own. He is a bit of a mystery to us all at this point in time and will be even more of a mystery tomorrow if he needs teintubated again!! Im hoping and praying he breathes himself tomorrow as its a step closer to having him home.

@EKGEMS

Thankyou, very similar to my situation with the baby being fine after birth, I was so shocked he had all these issues yet held up so well for 14 hours! Total madness. I suppose our wee blessings are just unpredictable 😂

@Christmastreeohchritmastree

I will have to ask as nothing to do with allergies has been mentioned and certainly something I've not thought about. Thankyou 😁😁😁

@Smurf123

I don't know if he's been tested but it's something I will ask!! Thankyou 😁😁😁

@BuntyCollocks

Where to start lol!! So he was measuring 3 weeks ahead at every midwife appointment, she ended up referring me for a growth scan. This came back that he was infact larger than should be. It also came back that I have a septum in my uterus.. And that he was breech. Because of this septum they were convinced he would not turn. At 36+6 I went for another growth scan and he hadn't gained any weight or changed size in a week since my last one. The doctor decided it was best for an elective section to be carried out all things considered, he also said he was almost certain it was due to inaccurate measurements as he was very active in the womb so scans were pretty long and difficult however it was best to go early at 37+2 which I now regret as I'm sure it's just his wee lungs are just under developed and had he had been in the womb for even an extra week he may have been fine. But who knows!!! All nurses comment on how large he is and I do think because of this they didn't suspect he could have anything wrong with his lungs!

It seems from what you've described that there is no problem with his actual breathing effort - the instinct is there and the mechanics are working, ie he is inhaling and exhaling?
But is not maintaining his oxygen saturation?

Good luck for tomorrow

@chilliMayo

He was fine for the first 14 hours of his life! Everything was working as it should. The odd thing about his struggle after the last extubation was that he was making noises of struggle after an hour and a half and he looked like he was struggling but his sats didn't drop! There were no bleeping machines. Myself and my mum had noticed him making squeeking noises, he then started arching his back and his wee chest really looked like it was working. We informed the nurse and she and a doctor came to have a look, we heard them say he is struggling and then we were asked to go and sit in waiting room. But this may have been him hyperventilating after realising he had a swollen area around his voice box and air couldn't flow quite as freely as he wanted it to, after all he was used to the tube. So it may have been to do more with his panic rather than lungs and throat, no one can confirm this and that's the issue we're facing at the moment. Very frurstrating to hear the doctors say they don't know what the issue is as everything tested has been ruled out. He's healthy and thriving in every other way!!

@danni0509

Thankyou 💕💕

So sorry about this OP, I know how stressful SCBU can be and the uncertainties that go along with preemies.
My first thought was brain stem functioning, but if he has been given the all clear in that regard then it really does sound like a mystery. As hard as it is he is in the best place and it sounds as if the doctors are doing their best to rule out as much as possible.
Please keep us updated as to how your little boy does tomorrow

I have to post this quick ad then leave the thread as is taking me back to the near identical situation we had with DD when she was delivered in May - she had a weak windpipe and they thought a mystery skin “flap” that was making airflow tricky, she was on tubes and CPAP but finally extubated on day 4 or 5, I’m still in shock.

You’ve had this for 8 days, you must be in bits and I’m upset just reading this. My DDs issue just “went”. They think that she may literally have grown by the 0.001cm that was needed to get the flap to stop “capping” the windpipe but I don’t know if this is the case.... it’s just hearsay.

I am a late baker; DD1 born hale and hearty at 42w EMCS after failed induction. DS born at 39 and struggled with breathing; borderline admission to SCBU then he evacuated his lungs all over the floor of the ward 48hrs later. DD2 was ELCSd as my heart was being mental and the drugs I was on were so strong they felt it best to deliver.

It was so scary, she was with me an hour and that was it. She was whizzed off and tubes, bleepy things the lot. I was and am so angry and daring to believe that she’d be ok as 100s of folk have had 37weekers and “its term, baby will be fine”. I knew she wouldn’t be and nobody would listen. It didn’t matter, the shock of it all still cut me in half.

Now DD2 is actually massive. She’s a podge, drinks milk like it’s going out of fashion and she laughs and giggles at her brother and sister. She is STRONG, you would never know she was so poorly at birth and she amazes me every day.

Serious consideration: get some therapy within a month of your baby coming out of SCBU. I did and I swear it allowed me to function as a parent to my other two AND her. Yes I paid for it but worth every penny. Secondly, let folk help. If someone says, “what can I do” tell them to bring you pizza they’ve baked at home in a Tupperware to you in hospital. Tell them to come and see you in there so you can just have someone to talk to that’s not your shell shocked DH.

I want a 4th. That experience may put the kibosh on it but then I look at DD and pray that DH manages to talk about it all one day and we can move forward together. He was and is deeply traumatised but nearly 19 weeks later he’s coming through the other side.

I’m sorry for the essay, i was you in May and it was awful awful awful. I feel truly dreadful for saying that was the worst day of my life and then the worst days of my life after that (and I’ve been through divorce and my mum dying); my daughter was born, that’s a thing to celebrate, surely?

But you will get there. Your baby will be extubated and then intubated perhaps a couple more times and then they will either go “ok, it’s fine now, he can breathe unaided” or they can assess the situation better and perhaps surgery may be needed.

Anyway, what a fucking ramble.

I don’t know you but I want to send you, your baby and your other half my love and hugs and positive vibes.

Signing off now as I’m finding even typing this all v hard indeed.

@cardamoncoffee

It sucks! He has been monitored for 48 hours on EEG and had some brain ultrasounds that all look great but i am going to ask them about this as things can be so easily overlooked, it's worth looking into everything.
I will post the outcome of the extubation tomorrow 😁!! Thankyou 🤞☺️

Good luck to him tomorrow x