Alex is apparently in one of those anxiety-prone phases that toddlers go through – just before the holidays, he started having what appeared to be nightmares, waking up in tears mid-nap or at inconvenient times throughout the night, sobbing. He’s even had night terrors, sitting straight up in bed, crying inconsolably, but not awake. Our carefully crafted bedtime ritual of jammies and a story and having Alex lay down (and being asleep within five minutes of us walking out), he started crying when we’d close the storybook.

It’s a normal toddler phase, really – he understands object permanence. He remembers things longer (like he remembered his former OT when he recently saw her, even though it’d been 3 months since their last appointment). He’s got a mind of his own and lets us know very clearly what he likes and dislikes. And while on most things, we’re supposed to count his “adjusted” age (his actual age minus the amount he was premature), we’re all very aware that we’re on our way to the terrible twos, with a child who is basically non-verbal and only does a handful of signs (though he recognizes dozens of signs, his motor skills are still working their way up to doing most of them).

But Alex isn’t just a typical toddler. To the normal toddler anxiety and nightmares, we had to add a weekend trip to Florida over the holidays (his first real experience sleeping someplace new, which included a rather traumatic incident where he pulled his trach tube in the middle of the night, in the middle of a night terror). Then he got sick the very next week, and said illness resulted in an ER visit, which then resulted in an overnight stay in the PICU. Adding all that together, you’ve got the makings of an emotional mess.

And that combination would likely be a mess even for a typical kid…Alex has still been in the hospital more days of his life than out, though we’re quickly approaching the tipping point there – assuming we avoid any more in-patient days, February 9 will be the day he’s been out of the hospital as many days as in. He’s already got a fear of anyone wearing blue gloves (and even my dad, who has his own share of emotional issues, remembered that while we were in Florida). He sobs when anyone tries to use an under-the-arm thermometer. It’s nearly impossible to get a real blood pressure reading, because he panics and starts screaming – heart-wrenching, really, since we can’t actually hear his screams because of the trach.

He’s afraid of the pediatrician’s waiting room right now because he’s in every 28 days for synagis (an antibody given to help prevent RSV in preemies) – and he gets two shots of it each time, because he’s grown. Plus, all the 15-18 month vaccines and flu shots (all 4 of them) he had spread out over several months this fall.

Needless to say, we’ve got some serious anxiety going on right now, and since we know there is surgery in his future, it’s only going to get worse. Our recent PICU stay just highlighted this – he was fine with a nurse in mask and gown until she tried to take his temperature. She gave up and took his blood pressure while he was napping. He was fine with the whole crowed of people on rounds, until the doctor pulled out a stethoscope and tried to listen to his lungs.

So, what to do?

A couple weeks ago, we bought him a doctor’s kit (Fisher Price brand) – it looks like this:

It’s got all the things he is most afraid of – blood pressure, thermometer, syringe for shots, otoscope, and a stethoscope. We added our own blue gloves, which came from the PICU during his stay a few weeks ago.

We’ve been asking the day-shift nurses to help us by playing with Alex with these – checking the temp of various stuffed animals, the housekeeper, him, the nurses, etc. While he was initially hesitant, he’s actually has had a lot of fun with this, and becomes more creative with it as his comfort level increases. He’s even put the stethoscope on his nurses. He likes pumping the blood pressure cuff, though he’s still not happy about putting it on him or anyone else.

We were hopeful that this desensitization and the role playing it allows will help with the anxiety he feels, and so far it seems to be working. This past weekend, we were in the pediatrician’s again, because it seemed that Alex’s respiratory infection was getting better, but then it got worse again. Turns out he has an ear infection. But this time, he didn’t completely melt down over the thermometer – he looked worried and shed a few tears, but it’s definitely an improvement. He’s still not keen on people looking into his ears, but he did let the doctor listen to his lungs – she even helped by listening to his stuffed Cookie Monster doll first.

That leads to the second part of our plan.

We had originally planned to modify one of Alex’s stuffed animals to have a trach and a g-tube, or maybe to go to one of those stores where you create your own stuffed animals. That way, he could practice on the toy, and we could do the same things to the critter that we do to Alex so he can see and be involved. We could take it’s temperature, clean it’s g-tube, check it’s ears, and take it along to the doctor appointments and hospital visits to help him understand what we’re doing.

But an even better solution came up in the week between thinking of this idea and actually writing about it.

Alex recently got a “speaking valve” (a one-way valve that lets him breathe in through his trach, but won’t let him breathe out that way – the air has to go up to his nose and mouth, so he can make sounds like a typical kid). The company that makes his valve, Passy-Muir, has a program where if you send them a picture of your child wearing one of their valves, along with a form, they will send you Toby, their TRACHeasaurus mascot, a plush dinosaur with a trach already installed:

So as soon as Alex stops coughing so much, we’ll get his Passy-Muir valve back on him, get a picture, and get it sent in, because adding a g-tube to Toby would be far easier than any other suggestion so far.