Frankly...we weren't ready to leave him behind.
We're still not to the point where he's been out of a hospital more days than he's been in one (though we're getting close - we extended the number of hospital days by a day this week, but we're within a month of making it). We have no family willing to take on learning how to care for him - Acorn's grandmas and grandpas won't even suction him, much less do anything hard. So our only option other than bringing him along was to leave him here with nurses 24/7...and we have a hard enough time keeping things together when we're both here every day that it seemed like a recipe for disaster to leave them in charge of him for 4 days.
Besides, who leaves their kids at home when they go to a big family event?
There was some marital strife in getting things organized - do we take the car seat on the plane? I didn't think so, but Big Oak intended to do just that, right up until 2 days before the trip. He also didn't really understand the meaning of the phrase "formal attire requested" on the wedding invitation.
In the end, we purchased a CARES seatbelt system (no compensation for this link - we bought it locally, and I'm just telling you my opinion about it). This turned out to be a fabulous idea. The car seat got checked (for free). We put Acorn in the airline seat, buckled in quite calmly, and he sat through both flights with no issues. He did get up during each flight to climb between our laps and flirt with the flight attendants, but expecting anything less from a toddler is just silly.
The reason this was such a great device though, besides it fitting neatly in a corner of my tote bag and containing Acorn for takeoff and landing, was that there really was no way we could have managed his car seat on the plane.
We had 2 carry-on sized suitcases of medical supplies and equipment. We had the backpack sized oxygen concentrator. And we had 2 backpacks - one for "immediate needs" like diapers and suction, and the second for "emergency backups" which included the emergency trach bag, ambu bag, spare clothes (have I mentioned that Acorn pukes several times a week still), and the backup battery for the oxygen concentrator.
You'll note there's nothing there for us, and no toys, food, bottles, or clothes.... We did each have a bag to carry on, and mine was half full of toys and bottles. *sigh* It's a good thing my computer is so tiny.
Carrying all this stuff through security in Detroit was no big deal. They have a screening line for families and people with medical needs, and they knew what they were doing.
Getting home from W. Palm Beach was not as smooth - no special line, and they didn't know what half the stuff was.
At any rate. One thing that we didn't really realize was that at home, everything is laid out. If we go out for the afternoon we take a duffel bag that is packed at all times. Things are in their places here, and everyone knows where to find everything. We've got cable management set up for all the power cords, and things have been sort of arranged based on usage.
While out of town, however....every time we left our room, we had to re-pack. How long would we be gone, what equipment would we need, what meds? Every time we went to do a normal routine care bit (changing trach ties, or cleaning Acorn's g-tube) we had to search through the bag of supplies to find what we needed.
We also didn't have the ability to just throw things in the wash when he puked, so we had a lot of things hanging over the side of the bath after they'd been rinsed out.
The biggest "real" problem we had was the lack of a break - no one there knew how to care for Acorn, and no one was willing to learn.
So, when he accidentally pulled his trach out in the middle of a night terror after we'd all gone to bed the first night...and he didn't turn blue, so we didn't figure out right away what the issue was....and an hour later we had nearly called for an ambulance after struggling for several minutes to get the smaller "emergency" trach in....
...we had no one to keep an eye on him while we napped the next day, and no one to sit with him when he was up at 7 the day after, and we couldn't stay awake.
We finally gave up on the ventilator our last night there. He was only supposed to be on 2 hours, and the night before it'd taken almost an hour and a half to get Acorn untangled, disconnected, connected to his nose, and then, because that had woken him up, back to sleep. There was no way I was spending more time messing with him than he was going to spend on the vent, and he slept just fine without setting off the pulse ox once.
The other thing that was really exhausting, besides hauling stuff from the hotel to the car to events and then back again was the questions. We take Acorn out a fair amount, and little is ever said, but for whatever reason, every place we went people had to ask "what's wrong with him" and other things like that, and it got tiring to answer over and over again.
When Acorn puked at the wedding, the facilities manager got upset and tried to make us go to the ER for an evaluation for a concussion, because he'd fallen and hit his head earlier. Telling her that he vomits regularly just made her more concerned, because "kids don't just vomit" - ours does, and this is so much less vomiting than he used to do that we're not even concerned, other than the fact that people won't let us actually clean him up.
I didn't manage to get a photo of the stroller with all the suitcases on it, but we do have this one from just before the wedding, with about half the bags on it that were on it during most of the trip - that's me, Acorn, and Big Oak in our wedding finery. I worry about our poor stroller, and hope it holds up, but we bought it used so I suppose if it falls apart, it's not such a huge loss.
So, the moral of the story:
Traveling with a trach kid (especially one still on oxygen and a vent) takes way more equipment and supplies than it seems like it should. It's also exhausting in a way that few other things have been on this journey of ours. Would we do it again? I'm not sure - we're still thinking about that. Maybe if we had a couple days off when we got back where we had nursing most of the time so that we could catch up.
Had our first night not been so messy, or had we had a day off when we got home, we probably would have been fine. Instead, we had 4 days of early morning doctors appointments in a row when we came home, and Acorn and I both caught a respiratory bug the weekend after the trip. We're only now feeling mostly better, and I am still behind on sleep.
Even so, we have already made plans for a very long day with no nursing next month to take Acorn to a powwow (my family is Lakota/Sioux, and I want him to have connections to the culture), and then to movie night at a friend's place, all of which is about 90 minutes from home. But there will be a nurse here when we get home, and it won't be 3 sleepless nights in a row.
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