Update: Arden’s September ’21 Trach Clinic

On Friday Arden had “trach clinic,” which fortunately, we were able to participate in over the phone instead of driving all the way to Edmonton and staying in a hotel. We had all good things to talk about with our team, and I’m so excited to share some of his progress!

During trach clinic, we get to speak to a pulmonologist, the ENT, the respiratory therapist from homecare, and the respiratory therapist who works with us through the Respiratory Outreach Program (R.O.P.). Following that, we also speak with the home nutrition team which includes a nurse, a dietician, and a speech pathologist. 

Since Arden has been doing well with 10 minute off-the-vent trials, we decided to increase his trials to 15-20 minutes, depending on what he tolerates. These trials will still take place 3-4 times per day, again, depending on what he tolerates. 

For the past 2 weeks, Arden has been able to have his trach cuff down during all awake hours. I had opted to keep it up when he was sleeping for two reasons. One, because it seems to bother him and wake him up if it’s down when he’s trying to sleep. And two, because I was worried about the potential for aspiration when he gets feeds during overnight sleep. Both of those thoughts were confirmed by the team, and we decided to keep it up during sleep times. 

Having the cuff down when he’s awake has meant that Arden has been able to make a lot of noise! I asked if there was anything I could be doing to support his development of speech. But aside from a few small suggestions (of things we’re already doing), the ENT reminded me that since he’s only had his cuff fully down for 2 weeks, that means that he’s only had the opportunity to control his voice for 2 weeks! I need to remember that most kids his age have had the opportunity to control their voice for almost 17 months! It was a great reminder that we’re doing the right things, and that it’ll just take some extra time for him to achieve speech milestones. 

Our pulmonologist also decided that since Arden is older, bigger, and stronger, we would change the inspiratory time on his vent from 0.6 to 0.9. Essentially that means that when the ventilator gives him a breath, it will now be a longer one than it was before. That means that Arden will be able to take longer/slower breaths, and that his lungs will be able to achieve a more appropriate volume for his age and size. So far it’s been working great, and his respiratory rate (how many breaths he takes in a minute) has decreased significantly. 

When Arden was really little, he was what we referred to as “tachypneic.” That meant that Arden had to breathe A LOT of tiny breaths in each minute in order to achieve the ventilation and oxygenation that he needed. This has improved a lot as he’s gotten older, and that’s a great step in the right direction. 

In two weeks, as long as the change of the inspiratory time on Arden’s vent goes well, they will also call and talk me through how to change the “pip” on Arden’s vent from 19 to 18. The pip is the pressure that the vent delivers to Arden’s lungs when he inhales in order to inflate the lungs to achieve the volume he requires. As Arden is getting stronger, the hope is that we will be able to decrease that pressure a little bit. 

As far as oxygen goes, Arden has not needed any oxygen T’d into his vent during the day for quite some time. He has continued to use ¼ litre per minute of oxygen during night time sleep, and we are hoping that he won’t need any extra oxygen soon. The team suggested we get an overnight oximetry study done to determine whether we can ditch the oxygen or not. I’m certain that he’ll pass with flying colours and that’ll be another milestone checked off!

When I spoke to the home nutrition team, we also decided to make a few leaps forward! With Arden being able to come off his vent for longer periods of time, and him being able to manage his secretions better, it was decided that he can start tasting! Essentially this means that Arden will be allowed to have small licks of his formula. He’ll do these tastes when he is off his vent and his cuff is up. That way he will have less chance of aspirating. We tried it this weekend and he absolutely loved it! 

In addition, it was suggested that we start letting Arden have very small amounts of blended food mixed in with his formula. That way we can work towards him being fed with real food! 

All of the trach clinic discussions were incredibly positive, and we are so proud of everything that Arden has accomplished! Onward and upward!

XO, Rayel