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37 weeker struggling off ventilator!!!

38 replies

Daamunn11 · 26/09/2019 22:34

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!

OP posts:
Catquest1 · 29/09/2019 07:47

Realpy hope the extubation today goes well OP.

How much cpap is your little one on? Have they done a bronchoscopy?

Daamunn11 · 29/09/2019 21:36

@Rivkka

Thankyou. 😁

OP posts:
Daamunn11 · 29/09/2019 21:41

@Catquest1

He was successfully extubated at 2am, so has been breathing fine for nearly 20 hours. He is on vapour therm, he started off at 8 has since reduced to 6 and will be reducing further through the night and onward until they are confident he doesn't need it anymore. His feeds are now over full feed at 40ml and he's still hungry. He's wearing clothes, off all medication and was able to come in and out of his little cot for cuddles all day. He is doing absolutley amazing I could not be more amazed and proud. After all of this I just pray he continues to be strong cause at this rate he will be home in no time! Reintubation would break my heart. I don't want to watch him struggle with the horrible tube and can't bear to see him in Nicu anymore. I don't know if there is a certain point when he is out of the woods for reintubation but I like to keep hopeful that he has passed that point. He is such a strong boy.

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danni0509 · 29/09/2019 21:51

So pleased for you Smile

Hope all continues to go well Thanks

cardamoncoffee · 29/09/2019 21:56

So glad to hear this OP, onwards and upwards little man 🎉

Daamunn11 · 29/09/2019 22:32

Thankyou ❤️❤️❤️

OP posts:
Catquest1 · 29/09/2019 23:05

Oh that all sounds extremely positive! Here's hoping everything goes going well.

Very best wishes to you OP :)

YoureAQuizardHarry · 29/09/2019 23:10

Have they tested for
myasthenia gravis? It's not very common but does clear up alone

Rivkka · 30/09/2019 12:14

What a great update, enjoy those lovely cuddles

bruffin · 30/09/2019 21:18

Thats good news

My dd was born at 37.2 on 18th september although not induced etc and had no problems. That was 22 years ago, so she is all grown up.now.

moodybum · 30/09/2019 21:27

Our son was born at 36+5. He was only tiny so we were on scbu until he established feeding well, day 8 he developed a stridor (like a squeaky wheelbarrow) and by next day was struggling to maintain his sats and had to be put on cpap. Our local hosp cannot support this although had the machine. So he was Blue-lighted to a national children's hosp. He was diagnosed with Vocal cord palsy.

Sweetpotatoaddict · 30/09/2019 21:36

Just read your whole thread, just wanted to say you are in an amazing place and i’ve No doubt you will receive the best care. So pleased to read he’s been extubated successfully. Best wishes Flowers

ekollia · 30/12/2021 12:59

How’s the lo now?

We had exactly the same issue la with my DD

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