We Had to Call 911... Again!
/One week ago today Jack went and gave us another big scare. He again took another drink from his tubes and was unable to breath for what seemed like an eternity. This lead to another 911 call and a trip to the emergency room. This time was it for us. We had to figure out a way to prevent this from ever happening again. Keep reading to get the full story and what we are doing to prevent this from recurring.
For those of you who are unfamiliar with a tracheostomy let me break it down for you right quick. Jack needs a ventilator to breath consistently. That ventilator pushes his breaths and air pressure through his trach, which is located in his throat creating an open wound. Like most open wounds the body, being the crazy cool healing machine that it is, attempts to close that hole.
Obviously this is not something you want so the trach is always in the hole and we have a humidifier that keeps the air going through it moisturized. If we are traveling or away from the heater we use a special attachment called an Heat Moisture Exchange or HME for short. These two things help to ensure that the wound stays in tip-top condition and that the air he is breathing is not drying him out.
Jack with his HME on and his heater in the background.
As with all humidity, water build up can occur especially if the temperature changes drastically or if the room is colder than the air. Science! Between the changes in the weather and the need for air conditioning a large build up of water occurred in Jack’s tubing and when laid down to have his tushie cleaned, gravity sent said water rushing down his trach into his throat. I can only imagine that this feels like being drowned or some sort of water torture situation. Naturally he chokes, panics and in turn cannot breath.
I was just about to wrap up my day of work in the office when I got the ominous text from Josh “Everything is okay”. This is the sort of text message you send right before you follow up with “but… there are 2 ambulances and a cop car outside of our house - don’t freak out.” After my I responded Josh called me and explained that Jack had taken a drink and that he was going to rushed to the hospital via ambulance. I sped home like a bat out of hell. The ambulance did not want to wait for me, understandably, and I passed them as I pulled down the street. Luckily for all of us it was therapy day and our therapist was gracious enough to not only help Josh triage the situation as it unfolded but also to stay with Rory while Josh and Jack headed to the hospital.
I walked in the front door and it looked like a tornado had hit a medical equipment store and strewn all of the supplies about our house. There were oxygen tanks, tubing, keys, an ambu bag, and suction supplies everywhere. Our therapist then described how all of this came to be…
Josh had laid Jack down to change his diaper and when he got up to throw the diaper away and wash the doodie off of his hand Jack began to act strangely. He rolled himself over and was struggling to breath, then his color started to fade. Josh triaged the situation perfectly but when he got to the step of suctioning Jack, he found that his suction catheter was not attached to him as it normally is. We had had a different day nurse that day and she had detached the piece. In a calmer moment this would have been just fine. But these things are anything but calm. Josh was sent into a frenzy trying to remember which bucket the suction catheters were in and immediately directed our therapist to call 911.
They were able to get Jack back to his normal, happy breathing self. But a trip to the ER was still in order to get x-rays and make sure everything was as O.K. as it seemed. All was well and we were able to go home all together and get some much needed sleep. Josh and I both went to bed knowing that not only did we need to figure this water thing out but we also needed to be more prepared in the event that something like this should happen again.
Luckily we already had a doctors appointment scheduled for the following morning so the first thing to tackle was how to address the excess water. We spoke with his care team and they advised the following:
Use the HME more often
Try wrapping a thin blanket around the tubing to keep the cooler air at bay and reduce the water build up.
We now have two circuit tubes ready at all times. One with the HME and one with a blanket wrapped around. We are using the HME whenever he is awake and moving around and switching to blanket wrapped tube and the water heater when he is asleep. I am happy to say that it’s working! We are already seeing less water in his tubes and we have had no drinks big or small. Disclaimer - I am not a medical professional and this is the advice we got specifically from our care team, before taking these steps for yourself check with your physician.
Jack with both of his new tubes!
We have also developed what we are lovingly calling an “Oh Sh!% Box”. Now no matter the situation everything we could need is in one place and easily accessible. Our box contains the following:
Inline suction catheters
Open suction catheters
Saline bullets
Custom size trach
Downsize emergency trach
Lubricant
Scissors
Tweezers
Flashlight
All is well here now and everyone is back to being happy and healthy. I could not be more thankful to our therapist, the EMTs, the ER team and most importantly Josh. If each and everyone of them had not done their part we may not be in the same situation we are in today.