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.

Extubation talk

Today the medical team in the ICU started preparing Samuel for extubation. The ventilator settings are at desirable levels and Samuel is responding well. A plan was made for sedation so that Samuel would be awake enough to breathe but not upset or uncomfortable. An NJ tube was put in so that feeds will go directly to his intestines, bypassing the stomach and reducing the risk that he could vomit and aspirate fluid into his lungs. Another antibiotic was added to cover the ventilator-associated infection (since he didn't listen to me when I told him no more infections!), even though he is not showing any outward signs of being sick at this point.

NG tube in one nostril, NJ tube in the other, ET tube down throat. What will these people think of next?!

Monday morning at rounds, the intensivist in charge will decide if Samuel is ready. If she gives the green light, Samuel will get to try life without a breathing tube for the first time. He will still be on ventilator support with an air-tight mask over his nose and mouth. The RTs will be challenging him to work his lung muscles and show us what he can do. He could be reintubated in hours or days and then we will resume the tracheostomy talks. Or he could demonstrate that he is strong enough to manage with less invasive oxygenation strategies.

Last night I went to the store on my way home and bought Samuel sleepers and hats. He only had two that worked and he managed to pull a typical baby maneuver by barfing on one and pooping on the other all in one day. He'd outgrown the newborn sizes - yay! He needs ones that don't go over his head and that snap all the way from ankle to neck so that they can work around the various lines. It was one of the most delightful shopping trips I have ever had, getting to outfit my baby who I didn't expect to be here.

Today we bathed and dressed him and then his brothers came for a visit. Getting a family photo was a bit challenging given that both Chris and I have a propensity to appear severely deranged in photos. Below is the best of the lot, the first of our family all together. Does anyone know how to photoshop Chris' eyes open?!

As Zachary says, "We are a SIX FAMILY now." Here's proof.

Daniel and Zachary have shown a real interest in Samuel and they spent a long time interacting with him today. They all held hands with him and showed him toys when he opened his eyes. They also set about trying to give their father an anxiety attack by constantly tripping over Samuel's lines and almost knocking over the IV pole. The ICU is no place for a crew of healthy boys. Jakey got his popsicle and went to the waiting room with Chris. Daniel stayed the longest, stroking Samuel's head, talking sweetly to him, and asking me lots and lots of questions.

It was a very sweet time for me to realize that my big boys really do love their baby brother. (Okay, I am not so sure about Jakey. I would not be surprised if he was plotting a superhero ambush of Samuel as soon as he can get him alone.) Zachary talks all the time about Samuel and how he feels happy that he is alive but sad that he is sick. He draws him pictures and writes him notes. Daniel is quieter about it but says he is sad that Samuel is having to go through so much and that he wishes he could hold him. Jakey cuddles up to me and asks if he can still be my baby for a while until Samuel comes home. One night he told me that he wasn't feeling well and his primary symptom was, "I feel like I have a tube down my throat." Come on, buddy. Mommy is a psychologist. At least make me work for the meaning here.

I think we are doing okay as a family considering that the juggling is just plain hard and we are into our third month of hospital life on the heels of some rough months before Samuel's birth. We take it day-by-day as much as possible. And it seems certain that one of the days this week will include that 'extubation' milestone. We pray for Samuel's strength to negotiate this step.

Jakey's popsicle face. Hannah help me, this child is, um, "full of life."

Zachary.

Daniel gets some time to sit quietly and hang with Samuel.

Our four boys.

TWO MONTHS OLD!!!

Yesterday, our Samuel celebrated two months of life. And there was lots to celebrate. The last few days have shown some heartening progress.

In terms of sedation, having Dr. Ferrin from Acute Pain Services involved has been amazing. Samuel is off of morphine and ketamine and almost off of medazalam. He is doing well on oral methadone (yep, the drug used to treat heroin addicts) and clonidine. He is waking up more often, looking around and taking in those of us here loving him and tending to him. Since he has no need for IV nutrition and has only two medication infusions left, Samuel's major central line was removed so he has just the PICC line in his arm. Woo hoo!

In terms of ventilation, Samuel is doing beautifully. With the right sedation on board, he is now having very few desats and bradycardias. His sats get droopy when he needs a suction, where they help pull secretions from his lungs since the ET tube prevents him from coughing on his own. He cries if he is annoyed about a blood test poke or diaper change or if he has gas pains - things that a normal baby would get annoyed about. However, Samuel recovers on his own most of the time now without additional medication or oxygen support. This indicates that his cardio-pulmonary bed is getting less reactive or, to us lay-folk, that his heart and lung muscles are getting stronger.

The weaning of ventilation over the past days has brought Samuel close to the settings he would need for extubation. He has not flinched in response to these changes so his team is quite optimistic. If everything stays the course as it is - and this is always a big "IF" with Samuel - then he will likely be extubated within the week. They will try moving him from the endo-tracheal breathing tube to a system called bipap - a mask that can provide oxygen and pressure as needed. We will see how he does from there.

In terms of feeding, Samuel was weighed this week and delighted everyone (especially Roxanne the dietician!) by having gained a whole kilogram since birth. He is now just shy of nine pounds. His feeds have been increased to account for his new weight. He has thrown up a few times but this may be a bit of sedation withdrawal or some of the reflux so common in these babies with mixed up innards. It may also be an infection so the cultures have all been sent off again just in case. I told Samuel in my very most authoritarian mama voice that he is NOT to get an infection now. No stinkin' way, Mister!!!

Once again we ride the waves of feeling so excited and also cautious. Our excitement has brought us to a plummet several times now. Every day is another reminder to be in each beautiful moment. I cuddled Samuel two days in a row this week, sometimes with him peacefully sleeping and sometimes with him awake and gazing up into my face. I get to rub his soft belly and exercise his wee chicken legs and stroke his little head. He is delicious.

AND... Chris finally got to hold Samuel on Thursday evening. I called him at the hospital to see how his visit was going and I noted rather quickly that he had that "drunk on baby" quality to his voice. Chris told me, "I'm holding him! I'm holding our son!" The nurses and RTs who engineered this hold were almost crying watching this pure daddy happiness. Soooo lovely.

Thank you all for prayers and love sent Samuel's way as we negotiate these next few days. I will update as I am able.

Samuel sleeping in my arms (with cap at a jaunty angle).

Well hello, mama! I trust you have a darned good explanation for all of this!