travel vent and cord
two batteries and chargers
stationary vent, stand, humidifer, and power cord
feeding pump and bags
suction machine and charger
apnea monitor and charger
pulse oximeter and charger
two extra circuits (tubes)
gallon of distilled water for inhalation
Then, of course, we brought an entire plastic box of supplies--ie: trachs, suction catheters, saline, hydrogen peroxide, alcohol prep pads, etc.
Here's what our van looked like. It's actually not as bad as I thought it was going to be!
Caleb had to crawl in on top of the box (that's the one full of supplies) in order to get to his seat. He kind of thought it was a game and didn't mind at all!
When we got to the hotel, we found a side entrance that was very close to our room. This proved really helpful, since we had to make...ummm....a lot of trips back and forth!
We ended up putting Abby in the closet, which may sound funny, but it ended up being a really good place for her. The vent and feeding pole were in the back of the closet, but still accessible, and she was out where it was open. The monitors were on the night stand next to our bed so that we could get to them easily. Matt and I each took a night sleeping next to the monitors and being the "first responder" so that the other could sleep a little more.
We weren't going to bring the feeding pole and just keep it in our travel feeding bag, but I'm really glad we did. The feeding bag doesn't stay vertical all of the time and it causes air gaps in the tubing. That would be a real pain to deal with all night, so this worked out better.
We brought Abby's changing pad with us for her "bed," then put a blanket on top of it. She needs to be elevated during feedings to avoid reflux (and she gets fed all night), so we put a pillow underneath the top to make her at a slant. It worked out well! She seemed to like her little set-up!
To avoid germs, we didn't put Abby down on anything that wasn't ours. We used her own blankets if we put her on the bed, couch, floor, etc. We kept the portable vent out in the living room (which doubled as Caleb's room!) so that she wasn't confined to her "closet" when we were in there. We pretty much only put her on her stationary vent in the closet when she was sleeping. To clarify, the reason we had to bring both is that the stationary vent has a humidifer attached to it. While the portable vent has a little piece that attaches to it to give humidity, the real himidifier is much better. If Abby doesn't get humidified air, the secretions can get too thick in her trach and she she can get a plug. We can keep her on the portable vent most of the day, but she needs the humidified air at least at night.
So, that's our set-up! It took us about 2 hours each to set up, pack up, and unpack when we got home. The hardest part is double-checking to make sure you have all of the cords that go with each machine and making sure that the things you need to have accessible are accessible in the car. When you have a lot of things that you need close by, this can get a little tricky!