The last ten days have been a whirlwind.
While rocking the home vent on his very first attempt, Garrin got an ear infection. True to form, his only symptom was a dramatic increase in oxygen which prompted a septic workup and the return of the hospital vent. After a short 36-hour break and a burst of antibiotics, Garrin was back on the home vent.
In the week since, Garrin underwent three additional septic workups as his oxygen needs were up, and on two different nights, he was up as high as 72%. Neither the second or third septic workup returned any valuable clues as to what could be causing Garrin’s increased oxygen needs. Although he was needing more oxygen, he didn’t have a fever or any other symptoms that would indicate an issue. His pulmonary hypertension has been stable, and his chronic lung disease hasn’t caused any “episodes” since before he underwent the tracheostomy procedure.
Without anything besides chronic lung disease and/or pulmonary hypertension to blame these “episodes” on, the providers at the care conference this week expressed serious doubt that Garrin would be ready to move to floor or the extended care facility any time soon. In fact, the pulmonary team gave me an estimated time frame of four months for moving through the process and finally being able to take him home. I was flabbergasted, to say the least, and like my students do when I give them an answer that they don’t like, I sought out other opinions. The neonatologist that has been on the most since Garrin was admitted to Children’s refused to give me any kind of timeline, referencing that Garrin could turn the corner at any minute and be ready to ship out to the floor in a couple of short weeks. No time frame is way easier for me to swallow than a four month time frame. It probably goes without saying, but these recent complications are challenging me to let go of what I had hoped the process would look like and instead appreciate every moment I have with him.
Those of you that have followed our story know that Garrin has spent his fair share of time on pure oxygen with all of the stops pulled out to help him oxygenate and ventilate. You’d think I would learn one of these times, but in my mind, those days were behind us. It wasn’t until I got a call from the nurse about midnight last night that I feared we may be headed back there, even with a trach. When I got to the hospital, Garrin wasn’t desatting, per say, he was just hanging at 88-89%, regardless of going from 44% oxygen to 68% in a matter of hours. Thankfully, we were finally able to get him to oxygenate at 72% oxygen after completing another septic workup. Surprising to everyone, his blood gas looked great, and the kid was sleeping comfortably – no increased work of breathing to be seen, which is particularly impressive (to me) because he didn’t have to come off of the home vent to recover.
This initial reading of the tracheal aspirate quickly came back, indicating moderate changes in the types of bacteria in the secretions collected from Garrin’s trach, so the decision was made to start him on an antibiotic. Within six hours, the nurse was able to wean Garrin’s oxygen by nearly 20%, and by the time I left tonight, he was comfortable on 33% oxygen, less than half of what he was needing overnight. I’m not sure that I have ever thought this in my entire life, but I hope he has an infection, because it would give some rhyme or reason to this sudden change in oxygen needs, postpone a number of more invasive tests that were discussed in the care conference, and potentially put him back on the path towards home.
Since the care conference, I have worried that my assessment of Garrin’s condition was completely off base, but I know my kid. Tonight, I am hopeful that the antibiotic will do the trick so he can show this new team what he’s really made of.