One of the things that was a source of anxiety when we went home was going to a doctor’s appointment. We go by ambulance but it was still something unknown to me.
I found out that preparing for it was half the battle. My nursing agency has a “Go Bag”. It’s a bag with all the essentials you might need in an emergency. It has a spare trache as well as a step down, trache care kits, suction catheter, blanket for a roll under the head,mask, ambo bag, spare vent circuit, gloves, normal saline, water soluble lubricant, etc. My other bag contains diapers, change of clothes, some thin blankets, burp cloths, hand sanitizer, wipes, aquaphor, nebulizing kit, and my wallet. Another bag is the portable suction machine with the new canister and tubing inside plus some saline in the pockets. I also put the power cord for it in one of the pockets just in case. So we carry 3 bags all in all and all of them can go on the stretcher that carries Isaac from one appointment to the next. Of course he is attached to the vent so we bring it with us with the portable sprint pack battery. Placing the vent on travel mode means you take the tubing that comes from the vent to the heater out and you replace it with the one that comes from the heater to the patient. You take out the heater wire of course and you plug it with the plastic cap that comes with the tubing when it’s new. We also put an HME on him when we leave the house. We always try to plug in the vent at the doctors office to preserve our battery. The feeding pump and the pulse oximeter is also something we bring with us plus some water for flushing the g-tube. The ambulance carries oxygen tanks so we don’t need to bring ours. A great ambulance company is essential during times like these. So I asked a mom whose baby already went home for a recommendation. The emts take us to the doctors offices and waits for us. They are familiar with the clinics so I don’t even have to worry about what floor or how to navigate the corridors of the building.
We only had one emergency situation during an appointment. We were probably 10 minutes from home when suddenly the vent alarmed and showed that the power was low! We were plugged into the main power supply of the ambulance, how could it have happened? While the emt that rode with us in the back tried to look for another power outlet and maybe a switch that they have failed to flip on, my nurse and I looked at my son’s pulse oximeter reading to make sure his oxygen saturation was still okay and we also took out the ambu bag so that in case we could not find a power source and the vent does fail, we could bag him until we got home and plug the vent in. Fortunately, they found the switch that turned on the power supply and the vent stopped making scandalous noises! It was an experience not worth repeating so every time we go to an appointment now we would plug in the vent just to be sure we don’t drain the battery completely.