Arden’s Respiratory Progress
Lately Arden…
Lately Arden has been doing so well that our hearts are bursting with pride.
Last night as he was having a bath, I recalled the tiny little baby who cried every time he got a bath a mere six months ago. It was always too much for him when we were in hospital. For various reasons, he absolutely hated having a bath. He was sore from surgery or other procedures. It was cold in the hospital. He was struggling to wean off of pain medication. His respiratory situation was precarious. Whatever the reason, it used to break my heart that something usually so comforting, could bring so much stress to our sweet boy.
Last night as we bathed him, he giggled and smiled and wriggled his legs out of pure joy and excitement. He was loving it. I couldn’t help but laugh and smile with him. For so many days, weeks, and months, I had begged the universe to give our boy reprieve. To let him have joy, and the simple pleasures and comforts of being a baby. And now he has many of those things.
Arden’s Respiratory Situation…
Arden’s respiratory situation is no longer precarious. In fact, he’s doing well, and he’s creating his own milestones as he goes.
When we were getting ready to leave the hospital, the respirology team pushed us to have Arden do regular off-the-vent trials. They wanted him to be able to come off the vent for at least a couple minutes at a time. It was purely for logistics’ sake. At some points in the day, I have to use the washroom, and Arden has to be unattended for a short period. We needed to know that if I was out of the room, he could tolerate it if he managed to disconnect his vent circuit from his trach.
However, they also wanted to push Arden to do more time off the vent. They pushed him to reach 5 minutes off, multiple times per day. They wanted to see him progress, push him a little, and see what he could do. We did too of course, but not at the expense of his well-being. In November and December, right before we came home, Arden wasn’t ready to take time off of his vent. He could handle a few minutes at a time, but any longer and he was miserable. He would panic and cry, and we knew he wasn’t ready. We knew that our boy was going home fully ventilated, and we were prepared for it. I could see that he wasn’t ready for more, and I refused to push him.
Call it mama’s instincts…
Call it mama’s instincts, because at that time, I knew that Arden wasn’t ready for those vent trials. Sure, he was ready for short trials, but the goal of 5 minutes more than once per day was unreachable. Not because he couldn’t handle it respiratory wise, but because it was traumatic for him. Arden was still weaning off of pain meds. He was still in a room with multiple people, noises, and experiencing restlessness and discomfort. He was holding his own, but he was not yet thriving. When we took away his vent, we made him uncertain and scared, and he would panic. In my opinion, at that time, it wasn’t fair to him.
Flash forward to now, and Arden finds his comfort in home, being with Brodi and I all the time, sleeping in his own bed, and playing in his own space. He’s happy, thriving, and excited.
Since coming home, we have been trying small vent trials at times when Arden has been up for it. But there have been times, during teething especially, when his oxygen requirements have gone up, he’s been uncomfortable, and we haven’t pushed him.
This week, something felt different. Arden is interacting more than he ever has before. Without being able to make a sound, he’s showing us what he wants by reaching for us or for specific toys. He’s smiling bigger and bigger. He’s playing little games with us. He’s trying to sit up without as much support, and he’s even attempting to power through some tummy time without tears. He’s using ½ a litre per minute (LPM) of oxygen around the clock, when previously he’s required at least 1LPM, especially for sleeping. He’s using his legs more and more, and despite his muscle and joint contractures, is kicking them a lot and using them to bounce in his exer-saucer.
Regular vent trials…
The time has been right, so we’ve started more regular vent trials. For the past few days, the goal has been to have him come off the vent for 5 minutes, 3 times per day. It’s amazing to see how he reacts to coming off his vent now. When I take off his circuit and turn off his vent, he doesn’t panic. He sometimes gives me his “scrunch face,” as if to ask, “What are we doing, mom?” But he doesn’t worry, he doesn’t cry. He continues to play.
Yesterday, we achieved our goal. He was able to come off of his vent, for 5 minutes (or slightly more!) 3 times. During those times, his oxygen saturation remained within an acceptable range, and he wasn’t struggling. Sure, it was hard for him. He was breathing on his own after all! But he handled it very well, he wasn’t worried, and his work of breathing remained fairly normal. We are so proud!
What it means to “come off the vent…”
When Arden “comes off his vent,” what it means is that we are taking off the tube that connects his ventilator to his trach (referred to as his circuit). He still breathes through his trach tube, but he is breathing on his own, without the assistance of extra pressure from the vent to help maintain the volume that enters his lungs or remains there when he exhales. Our hope is that one day, Arden will be able to breathe on his own without his ventilator. We don’t yet know if that will ever be possible, but it’s a dream that we hope will one day come true.
In order for Arden to be “trach-free,” he would have to be able to ditch his vent completely, and show that his upper airway was ready to allow the air to pass freely. Arden has not had upper airway issues in the past, so if he was able to go without his vent, we are confident that he could breathe on his own.
Sometimes babies get tracheostomies because they have blockages in their upper airway that prevent them from breathing through their mouth/nose. For Arden, he was provided with a trach because his lungs were not strong enough to function on their own, and he needed long term support. Arden’s lungs have gotten a lot stronger since he was born, but it is possible that he might always need his vent, and we are okay with that. Whatever our boy needs in order to thrive is perfect for us.
In the meantime, we’ll keep helping Arden to reach his own little milestones, and we’ll smile with delight and pride each time he achieves something new.
XO, Rayel