Home again

Owen got to come home Thursday afternoon.

I have to pinch myself his breathing looks so good!  He’s on low flow oxygen for the first time in two months and is doing great!  I think he’ll be down to his baseline 1/8 liter by the weekend.  Such a nice turn around from last weekend when he was having some breathing done for him.

In general, Owen’s had a good recovery from this illness, but the difference between Wednesday and Thursday was especially significant and that’s because there has been a big change in the inhaled medication Owen is getting.  Wednesday during rounds, the Pulmonolgist had a new hunch and asked for imaging of Owen’s airway as he breathes.  The hunch was confirmed and Owen has been diagnosed with something called Tracheomalacia (if you pronounce the second half of the word like the country Malaysia, you’ll get really close to right).  With tracheomalacia, your trachea (aka Windpipe) is not as rigid as it should be and can collapse during the breathing process.  A properly working trachea should only dilate and narrow slightly.  Collapsing, although temporarily, obstructs his airway and makes even more work for Owen to get it back open.  Collapse is especially a risk when Owen is working hard to breath, coughing or crying – all things that are common when he gets a cold, even the mildest cold.

How Owen has come to Tracheomalacia is unknown, he could have been born with it (very rare) or he could have acquired it due to all the ventilation and repeated infections (extremely rare).  More importantly, albuterol, the asthma inhaler that is typically used for  people with chronic lung disease and suspected asthma, relaxes the muscles around the trachea – actually making him collapse more easily.  Between the suspected allergies, RSV and this latest cold, Owen’s been getting Albuterol 4-12 times daily for the last two months.  When the airway collapses, Owen needs more positive pressure through high flow oxygen to help him keep the trachea open.  Mystery of the extended stay on high flow solved!

It’s really quite shocking to see how much Owen is improving since coming off the Albuterol.  It is a little frustrating to know that we were making things worse for him these last couple months, but it’s hard to throw blame.  I’d be willing to bet Owen has had between 75-100 different doctors (residents through specialists) listen to his breathing in his lifetime and it’s never been caught.  For one thing, it’s a rare disorder so not top of mind and Owen’s got a lot of diagnosis/suspected diagnosis going on with his lungs, so it’s not always easy to tease out which ailment is causing which symptom.  He has what is considered sever BPD, which basically means that his lungs were damaged from being on the ventilator and Owen spent a longer time on the ventilator than even the typical 24 weeker.  He also is considered to have asthma, which is a very rare diagnosis/suspected diagnosis at his age (you can’t actually test for asthma until 8-10 years old by which time Owen may outgrow it), he’s had multiple respiratory infections that weaken/temporarily damage the lungs, also, his allergies are a factor in his respiratory status and now we have one more known variable in tracheomalacia.  With all of that going on inside those tiny underdeveloped lungs, I can’t really fault the doctors for not thinking of this rare problem sooner.

I am happy that we know so we can start giving him treatment that will help, not hurt, his progress.  I’m also a little wary because separately Asthma and tracheomalacia tend require hospitalization for even small colds.  Owen has both.  I now understand why, even though we lived in an absolute bubble this winter, we still had more than 40 hospitalized days due to respiratory infections.  Next winter the bubble is going to have to be even tighter!

Worrying the unknowns of tomorrow is not how I want to end this post.  Let’s celebrate all the great work Owen is doing.  He’s making some great strides in standing.  Up until the last few weeks, he would not bear any weight on his legs and lately he’s started doing it!  Makes my heart smile and it looks like he’s pretty proud too!

Standing in PT with Early Intervention

Owen standing for Early Intervention Physical Therapist, Nancy