Saying this has been a chaotic week would be an understatement. It all started on Thursday at around 4:00am when I suddenly awaken with a struggle to breathe. I tried to relax and take steady, slow deep breaths, but even that left me slightly gasping for air. I was capped for the beginning of that night, therefore as I removed the cap, a large burst of air came out of my trach (a sound we usually heard whenever my throat started to close). At that point, we only thought the worst. For the remainder of the night I went back onto my Airvo humidifier and used an HME “nose” during the day. Around 5:30pm that night, it suddenly started to work again and I was capped for the remainder of the night and next day. It was such a strange occurrence, but once again reminded us why I need a trach for back up and how unpredictable my throat can be. But of course, it didn’t stop there!
On Saturday morning around 11:am, I woke completely oblivious that my trach was out! We suspected it fell out sometime while I was sleeping, but we didn’t realize it until after I woke up. My mom actually noticed it first and immediately moved fast to grab the spare (clean) trach to put it back in, because we know how fast the stoma can close. And that’s exactly what happened. My parents tried and tried to insert it back in. We even tried the emergency smaller trach (Shiley 3.5), neither worked. Fortunately, I was capped while it fell out, meaning I was stable enough to breathe on my own. After many conversations with the on-call ENT and with my head doctor at SickKids, it was too dangerous to drive to Toronto with the possibility of any complications on the way. It was bad because just the other day, I stopped breathing and depended on the trach, but now, since the trach is gone, I have no possible way to breathe if the same thing happened. With the help of the doctors at SickKids as well as a friend my mom has with another mom of a trach patient, they helped us come up with a plan to move forward.
The Local Hospital Fiasco:
Because we couldn’t head directly to Toronto, we had to head to a regional hospital about 30 minutes away from home. I’m about to explain the one bad experience we had there yesterday, but do know we are thankful and appreciative of many of the doctors as well as the nurses there and this time, we just dealt with new people that weren’t knowledgable of my past. When we got to this hospital, we expected to be rushed in, but there was no urgency whatsoever and I don’t think they understood every hour that passed, would only make it harder to try and get the trach back in. We waited in the waiting room and emergency room for a long time and then were finally introduced to the ER doctor who refused to speak to my SickKids doctor and because of protocol, called an RT (who just came over and said there’s nothing they can do because the hole is closed). We requested ENT be paged the moment we arrived, but they wouldn’t until RT said there’s nothing they can do. I understand that there are lots of protocol’s and other patients to deal with, but I don’t think they fully understood the urgency of our situation (especially because physically, I looked fine). We knew they didn’t understand when they refused to speak to my SickKids doctor and told us they think I might not even need the trach 😳 (lets just say, my mom was not happy about this) . After waiting for about 3-4 hours, I had a CT scan and the ENT doctor finally arrived. We explained to them the situation and he discussed to us that he would NEVER put in a 4.0 trach in someone my size and multiple times that “patients have died using 4.0 trachs” (I’ve been living with one for over a month and he said that multiple times to me. Isn’t that great to hear?). After that, he agreed to speak to my SickKids doctor who we had been updating and personally calling. He had been very frustrated with the fact that no one at this hospital was calling him and telling him what was going on. Let me tell you.. it did not go well. The ENT at this hospital was very set on what he would do, therefore instead of working together to come up with a solution for me (the patient), it turned into a back and fourth argument, finishing with them calling an ambulance and having me transferred to Toronto. In my opinion, I should have just been transferred much sooner instead of having me wait over 5 hours at the local hospital with very little progress moving forward. Overall, this is still a really good hospital and I’m not trying to criticize it, but instead, I wanted to explain the story/ situation we were in.
Transferred to Toronto:
After spending the entire day at the local hospital, I was finally dispatched to Toronto in an ambulance with a nurse and EMS team (we got to drive with the lights on😁). We arrived at SickKids around 9:10pm (the day is practically over already!) and I was taken to the emergency department where they were already expecting me. It moved very fast and within seconds I was taken to a private room where the nurse went over all the vitals and regular questions while the ENT team waited outside. They checked out my stoma and were able to see a very very tiny peephole (It was almost closed completely), so their first step was to see if they could push a smaller trach (3.0) through. They used a small scope camera to try and insert it down my stoma to guide the trach as well as make sure everything looked okay. For a few minutes, they tried multiple attempts, but unfortunately, the inside of where my trach needed to go, was already closed.
What to do next?
They covered up my stoma with a dressing and took me up to my usual observation room to keep a close eye on my breathing during the night with critical care also coming and checking on me during the night. Then, in the morning, they would decide what the best plan and next steps would be.