A Few Uneasy Weeks

The past few weeks have been a little wacky around here. Arden has been his adorable, casual little self most of the time, but he’s also kept us on our toes lately. These days have reminded me that as stable as Arden has been since we’ve been home, things can change so quickly. 

For one, our poor little man has been teething like crazy, And I mean, 4 teeth coming in all within a week kind of crazy. He went from having no teeth on the top to having 4 all within a matter of days. He really has handled it like a champ, all things considered. But I’ve definitely noticed changes in his behavior and well being that have been concerning. He’s had a ton of secretions lately, and suctioning has been non-stop. His secretions are also thicker, making them more difficult to mobilize. This has caused them to get stuck and impact his oxygenation. Where a few weeks ago, we had him on ½ a litre per minute of oxygen during the day, now we have him on 1 LPM around the clock. 

The night before last, he decided that bowel movements were a thing of the past. That in addition to the pain of teething caused him to spike a fever. Of course, Brodi and I did our best to remain calm, and neither one uttered the word “sick,” even though both of us were thinking it was a possibility. We’ve heard the stories about other trach babies getting sick and having to return to the hospital. We know a trach baby who returned to the PICU for weeks while we were there, simply because he contracted rhinovirus…the common cold. We have seen Arden when he’s been sick while in hospital with potential pneumonia. At that time, he needed to have a chest tube put in and increased settings on an ICU ventilator. We know that he has become so much stronger since that time, but those memories are still there, and they cause us to be fearful. We know that if Arden were to become sick, there’s a solid chance that we would be headed back to the Stollery in a hurry. 

These are just some of the reasons why we are so careful with him. We are almost completely isolated, aside from necessary visits from outsiders for Arden’s care. Our house operates like a miniature hospital where anyone entering is screened, and has to wear a mask and sanitize. I make Brodi change his work clothes to a clean outfit as soon as he arrives home at the end of the day. Not only are we in that 1% of the population to whom COVID-19 is a major concern, but any cold or flu symptoms could be dangerous. If Arden were to vomit, he could aspirate, which could be incredibly detrimental to his already fragile lungs. If Arden were to develop cold symptoms, the mucus alone has the potential to cause his lungs not to function well enough with his current ventilation. We’re always extra mindful, extra careful and extra clean. 

Yesterday Arden was feeling more peppy again. I’m hopeful that the worst of his teething is over for now, and that he’ll be getting back to his baseline soon. We have a visit to our pediatrician this week and that in itself is reassuring. Since he has done so well overall since we’ve been home, I guess sometimes I’m waiting for the other shoe to drop. It’s comforting to have our doctors and specialists remind us of how far he’s come in the short time since we left the hospital. 

XO, Rayel