July Update: Dealing with Setbacks

Since our last blog, we haven't really followed up on a number of big things that were hopefully going to happen for Malachi. We've been getting a number of questions about it and thought we should post another quick update!

(Canada Day)

Malachi was scheduled for a big test (a sleep study) in May to see in great detail how he was breathing at night without the ventilator. The sleep study looks at a ton of things, including brain activity, REM sleep, CO2 levels in the blood, oxygenation in the blood, how much work the muscles and lungs are doing, etc. At the time he was booked for the sleep study, he was almost 6 weeks ventilator free and we were very excited to see how the study would go. Unfortunately, only a few days before the study, he came down with a fever and needed his ventilator again. The specialists cancelled the sleep study and said their policy was that persons needed to be healthy for at least 3 weeks before a sleep study was allowed. When we inquired about booking a new test, we were told the wait list was 8 months. We were so disappointed and frustrated, especially since the fever went away within a few days and no one else in the family got sick either. It seemed very random and very bad timing. 

Thankfully, Malachi's medical team and Malachi's persistent parents were able to get Malachi on a cancellation list. Everyone was aware that we had a baby on the way and tried hard to get Malachi squeezed in somehow this summer yet. Even though we had to drive well over an hour, we told the sleep study specialists we would drop everything for a cancellation and come. So that's exactly what happened: on June 25th we were told in the morning that there was a cancellation for that evening and away we went. 

From our perspective, the sleep study went really well. Not only was Malachi tested on his Airvo (humidifier without the ventilator) for half a night, but they also trialed him with a cap on his trach (meaning, he was breathing around the tracheostomy tube and through his mouth/nose) for the rest of the night. Because his trach was a bit large and Malachi was having difficulty breathing around it, we decided to change his trach to a smaller size we had with us. This went much better, and Malachi slept well through that too! We were very hopeful based on what we had seen all night and were excited to see the official results from the specialists and doctors.

Sleeping peacefully during his sleep study

Fast forward to today (July 16th), when Malachi had an appointment to discuss the results as parents and healthcare team. We were very disappointed and surprised to hear that Malachi had had periods of apnea during the sleep study. This meant he would stop breathing for a few seconds (longer than normal), and his oxygenation would dip a bit into the high 80s before he would take another breath. Our home monitor did not pick up these dips in oxygenation during the sleep study because the settings are not as sensitive as the hospital's monitor. Thus, we had not noticed anything different at the sleep study or ever at home either. The apnea was considered one number shy of "severe" while he was wearing the trach cap (10 times he would stop breathing within an hour). 

What does this apnea mean? It could mean a few things...

1) Best case scenario, it could be the trach itself that is causing too much work for Malachi to have to breathe around and that makes him stop breathing from time to time. If this is the case, there is no issue to taking his trach out permanently... we just don't know if that is the real issue or not.

2) Worst case scenario, there are areas of collapse or obstruction in Malachi's windpipe/airway that are blocking him from breathing easily. This could mean reconstructive surgery on his windpipe and that would be a longer and scarier road for sure... It's one that we never considered having to go down since Malachi's need for the tracheostomy tube was never because of the structure of his airway but rather because of his premature lungs. 

How will we know what the apnea is from?

The next step is that Malachi needs to have a sedated bronchoscopy. He'll go to the OR and be sedated while his ENT doctor sticks a scope down his airway and checks out the structure and looks for areas of collapse. The ENT doctor will also try take the trach out while doing the scope to see how everything looks. If areas of collapse or obstruction are seen, the trach will go back in and we will have to talk next steps from there. 

In the best case scenario... if everything looks clear and healthy, then there is a small possibility the trach can stay out right then and there. That depends on whether or not there are hospital beds in the Pediatric Intensive Care Unit (PICU) available for Malachi to stay for a few nights or weeks (while they monitor him closely to see if he is tolerating being trach free and then wait for the hole in his neck to close).

The waitlist for a sedated bronchoscopy is at least 2 months. That was also very disappointing to hear. Our new baby is due August 10th and we were told that October is a reasonable time to expect an OR date. Our dream of having a "trach free Malachi" by the time our baby comes has officially flown out the window and into the window flew new concerns and worries. 

In addition to all this, Malachi has been losing weight and it has become a cause for concern with his medical team. He's falling behind on the growth charts at 23 lbs (which is over 5 lbs lighter than his brother Liam). We are doing our best to "fatten him up" with his feeding tube while still encouraging him to eat orally. It's a difficult balance, since the feed through the g-tube lessens his appetite and willingness to eat orally... which is a skill we don't want to lose! The medical team has also discussed with us how Malachi needs to be healthy and thriving if his trach tube will be removed... it won't be done if he is underweight, lacking energy, etc. He is definitely a very active, talkative, and busy toddler at this point but we do need him to start gaining! 

Malachi at the beach

Can't leave out the siblings... here's Liam!

Taylor

Still enjoying our summer! (Sidenote: Malachi is being safely held by Nathan so that he doesn't submerge in the water... the trach tube is a serious drowning hazard as water would flow directly into his lungs through the trach and/or through the hole around it)

At the end of the day, Malachi's test results were not all negative and could mean nothing serious. So we remain thankful and hopeful and prayerful that one day his tracheostomy tube can be safely removed - not just for his parents' sake (and all those involved in helping our family out with the heavy responsibilities that come with having a tracheostomy tube)... but also for Malachi's sake! And we are reminded again and again to trust in God's perfect plan for us all, amidst this messy and broken world we live in. He's in complete control, even when things don't go the way we have been praying for and longing for. What a comfort that is!