Extubated!

Samuel was extubated this afternoon at 2:30 p.m.. He went from ventilation via the endo-tracheal breathing tube to ventilation via a mask over his face. The ventilation system is called BiPAP and it offers pressure, rate and volume support as he had before but with the air around his face instead of directly into his lungs.

When they first pulled out the ET tube, Samuel spent a few moments looking around calmly and breathing room air completely on his own. I can't describe how exhilarating that was for Chris and I to see. The RTs fitted him with nasal prongs attached to a headpiece that holds the system in place. This was the least invasive way to go and we were hopeful he would handle it. He did not.

Samuel was not impressed with the air blowing up his nose and he just cried like crazy for a long time. The sweet part of this was seeing our Samuel's feistiness and... wait for it... hearing his cry! He has not ever been able to make a sound and has had a tube stuffed between his vocal cords for more than two months, so his cry was a barely audible, very hoarse, squeak. But we did hear him.

The not so sweet part of this was that Samuel's crying could not be settled and his wailing meant that the air was going in through his nose and then right back out his mouth. We tried to get him to close his mouth with a soother and then with a head strap but he fought back. My suggestion of duct tape was rejected. I know they wanted to try it but are bound by their professionalism to use their fancy medical methods.

Extra medicine, bum pats, hushing sounds, singing, and my very first standing-up-and-rocking cuddle all failed to calm him. His carbon dioxide reading at the first blood gas test was waaaay high and so Samuel was moved to a face mask that covers his nose and mouth. We can actually see even less of his face than when he was intubated but that's okay for the short term.

For you techies out there, Samuel is on a very new ventilation system with the BiPAP called NAVA - Neurologically Adjusted Ventilatory Assistance. Samuel's NG tube was replaced with a special tube that does all the usual things (that is, gets food and medications to his stomach) but also has electrodes at the tip. From their place in his belly, these electrodes receive the electrical impulses transmitted by Samuel's diaphragm and tell the ventilator how to respond to his immediate needs. Traditional BiPAP reads the signal from his actual breath; being able to read a signal from Samuel's impulse to breathe just makes the ventilation that much more efficient.

I found this incredible... the Autonomic Nervous System recognizes the need to breathe, the diaphragm receives the ANS signal and NAVA reads that signal at the same time so that the ventilator can assist whatever breath Samuel needs to take at the moment he takes it. If he needs a bigger breath to yawn or cough, the ventilator will receive a bigger electrical impulse and offer bigger support to that breath. The RTs can adjust the ventilator settings to allow him to receive less or more of this assistance as he gets stronger and ready for more challenge.

Also incredible was the realization that Samuel has enough natural diaphragm to trigger the NAVA system to respond to him. On the new ventilator monitor, we can see the little line spike as it registers electrical impulses from his partial diaphragm! Amazing.

There is a chance that Samuel will not be quite strong enough yet to remain extubated and make progress. We've been warned not to be disheartened if it takes him a couple of tries to make this work. If he does alright, the next steps are weaning his settings again to get him to the least amount of breathing support he can manage. Then they will do "sprints" where he is taken off the ventilator to do the work on his own, then put back on so that he can rest. His breathing muscles are weak from disuse and infection so the RTs will help him to build his strength.

Our wee babe is now more than nine hours post-extubation and doing great. He is very sleepy but it's good for him to rest as his body gets used to this change. It's been an incredible day for all of us; Chris and I were filled with hope, anxiety, and gratitude as we got to see and hear and hold our little boy through this new milestone. Go Samuel go!

One last pre-extubation photo.  

  

Samuel's near-naked face for the first time.

Holding and rocking my baby while he tries out his new nose gear.

 

Chris and Samuel holding hands... Samuel no longer needs wrist restraints to protect his airway from his grabby little paws going after the tubes.

Our Samuel now breathing with his full face BiPAP mask.