Things have not, unfortunately been straightforward in the last 24 hours.
We were woken at 2am by the Neonatal Unit asking us to come in as they were going to perform the tracheostomy on Max as a matter of urgency. When we got there the ENT surgeon was there and discussing things with the various doctors and nurses and they decided that their primary concern wasn’t the tube in his throat, as it was in the correct position, but the fact that the hole in his lungs was seeping air into his body and that the drains were failing to get rid of it. They inserted a new drain and got it draining some of the air, but his breathing was still not settling well. He seemed stable so we left at around 4.30 am. We came home and tried to sleep only to be woken at 6 am asking us to go in to talk to the doctors. The decision was made to perform the tracheotomy as his breathing was too unstable to maintain properly.
Massimo went in to surgery at 9 am and was out by 10 am. Apparently, as soon as the tracheotomy was performed his breathing and everything else settled immediately. It was obviously exactly what was needed.
The tube will stay where it is until surgery to fix his upper airway can be considered and that could be as late as when Max is about 1 year old, so he will be coming home with it in place and we will have to learn to deal with it. The biggest drawback about it is that as it is below the vocal chords we will be unable to hear him, however nothing could have given him a better chance of life and of getting stronger in preparation for future surgery.
Needless to say, both J and I have never felt quite so helpless nor so exhausted! We hope that in the next few days things settle down and Massimo recovers from all the stresses and strains of his first few days of life.
Fingers crossed for the next few days
My baby Akshay was born on the 29.01.03,only a couple of days older than Massimo and he is 1year and 5 days old today. He was born at 25 weeks 3 days , he went through a lot as he was prone to infections but pulled through very bravely. He is a gorgeous little boy and very stong.However he has had to undergo a tracheotomy only yesterday as he caught another infection and similarly as Massimo hie breathing was jeopardised and he was at risk and it was the hardest decision I’ve ever had to take. Having seen other babies with did not reassure me at all. He is still on the ventilator for the time being and is recovering. I am dreading the time when he will be fully awake as he is a very active little lad, very affectionate, babbling all the time and I can’t bear this idea of not hearing him. I would to like to know how Massimo is coping and how did you adapt to it. Grateful if you could reply.Thanks.
Dear Brinda
I have tried to send you an email in response to your message but it has been returned to me as undeliverable mail. Please can I have the correct email address?
Thanks
Silvia