The long and the long of it

should be used to this
no such thing as No Whammies
makes me pound my head

I knew that by posting about the impending bronch I would somehow jinx it. but I tried to talk myself out of it.

Self, I said. Self, how can you really be THAT egotistical? How can you believe that just because you write something and publish it for the world to see, you will, in fact, jinx things. Where is your faith? Where is your trust that things will be OK?

Where, Self? Where is my faith and trust that things won't get fucking fucked up at the last possible minute? My trust is on the tip of my shoe. And my shoe is in your ass. And that is very uncomfortable, kicking my own ass, so get with the program, Self, and stop trying to make me all non-cynical.

A jinx is a jinx.

Fucking jinx.

So anyway, we're home. Hooray! That's the good part. The bad part is that Ike-a-saurus is for real sick. He had like eleventy million white blood cells in his trach culture. They've put him on Bactrim for now, because we don't what is making him sick. Is it the MRSA again? Is it the strep pneumo again? Something new and exciting? We won't know until the culture grows in a few days. So until then he is on the broad spectrum hardcore mofo abx.

I have him on o2 right now, because his oxygen levels are low-ish when he sleeps normally, and Teh Sick just makes that worse. That means I got to fire up the oxygen concentrator for the first time. It totally looks like the walking trashcan the jawas had in Star Wars. It is also, certifiably, bad ass. This machine just sucks pure o2 right of our everyday gross air. We don't need bulky tanks that empty out after 8 hours because we have the Walking Trashcan Oxygen Making Apparatus! Cool. Not cool that he needs it, though.

This probably has you thinking, Damn, Haikumama, if you need the Bactrim and the Walking Trashcan Oxygen Making Apparatus, why the effing eff are you at home? Well, friends, we're home because I've had it about up to here (imagine my hand shooting above my head like Inspector Gadget) with teaching hospitals.

Now, I'm glad people want to learn things. I'm glad people are able to learn things. I'm glad the children's hospital facilities we have are pretty bad ass. I'm glad that most of the time doctors and nurses are very eager to listen to me and my husband and work with us on a plan of care. All of these things I'm glad about.

What I'm not so happy with is having to see 16,000 doctors, all with different ideas, all stuck on The Island Of Misfit Diagnoses, all with shiny hair, and impeccably applied lip gloss. I'm not happy to repeat our story ad nauseum when it is clearly and obviously on the sheet of paper the other shiny-lipped doctor just had in her hand. I'm not happy when they are shocked, shocked! that you are even at home with your trach baby to begin with. "You have to suction him HOW many times?!" "His baseline o2 level is WHAT?!" etc.

I'm not happy that everyone insists that the pulmonologist be the lead on Ike-a-saurus' team of doctors when clearly, our whole future is hanging on the schedule and the expertise of our ENT. I am not happy he needs a "team" of doctors to begin with.

I'm not happy that when the ER doc kindly asks if we would feel more comfortable staying overnight for observation and we eagerly agree, suddenly overnight is over, next day is here, a new round of 16,000 doctors appears and "overnight: for observation" turns into "maybe just a few more days."

Hell to the no. To.The.No.

We were doing everything at the hospital anyway. The nurses were staying out of our way, which was nice, but if we're going to be the ones administering meds and emptying the water from the trach collar and mixing botles and suctioning him – we want to do it at home.

It was important to make sure that Ike-a-saurus wasn't going to have one of those blindingly fast nosedives into sicker than sick, and that's why we stayed last night. Having a bunch of residents decide he needs an extra long hospital stay because ZOMG he has a trach! and ZOMG it has shit in it!!!11! Well, I'm going to vote against that.

And so all this leads up to what we knew was going to happen but hoped wouldn't – the bronch is postponed. Not even rescheduled. Just postponed. The anesthesiology team actually showed up to Ike's room, wanting to get some preliminary work done, and we had to turn them away. It makes me turn all pirate-y to have to do that. "Yargh! Yargh!" I say.

We talked to our ENT on the phone (it was his day off today) and he said it's really pointless to do the bronch tomorrow if the point is to see Ike's airway without inflammation. Obviously, eleventy million white blood cells means there's inflammation.

We went briefly crazy and got mad at the ENT for waiting this long to schedule the bronch to begin with. Ike was supposed to have it done in early to mid-March. It was as if we were just waiting for him to get sick. We explained to the ENT that living in a house with two other kiddos means we live in a germ factory, no matter how well we wipe doorknobs and keep things clean. It is what it is. And so we are having this next bronch THE VERY SECOND Ike-a-saurus is better. Not when it is convenient for the doc, but when it is convenient for Ike. We are on Ike's schedule now and we should have been this whole fucking time. Not to say it's the ENT's fault. It isn't – and he's a great, competent doctor. We are just getting really fed up with timelines getting all shot to hell. We want answers. We have been waiting two months for answers.

Give us. Some damn. Answers.

So we are home. I hope we get to stay here. We are all very tired and kind of beaten down by things.

And I still have to finish the taxes.

Is this a movie star life, or what?

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10 thoughts on “The long and the long of it

  1. mama knows what’s what, that’s for sure. you really do an amazing job. even i can say that and i live in another country.
    maybe all the doctors should subscribe to your twitter updates, and then they could all communicate. what an idea.
    fingers crossed that the bronch gets rescheduled for sooner than later, like, next week and the new drugs kick that infection right outta him.
    glad to hear you are home and well. and thanks for that sniffer! where would they be without you! yes, you can tell them i said that.
    hugs & coffee
    l

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  2. Yargh! Those are some good reasons to be not happy, and some good reasons to be righteously pissed off. I hope Ike’s meds work quickly, the bronch is scheduled asap, and the shiny-haired stay far away from you.

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  3. Ugh. So glad to hear that you are home. Good for you for putting your foot down for your little man. Besides all those shiny haired, glossy lipped neophyte doctors are just tracking their germy germiness all over Ike’s territory. What kind of fuckery is that for a tender little dude such as himself? You go mama.

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  4. Ike-a-Saurus has made his way to my email inbox through several different people in several different circles. I want you to know that his story is out there and being heard.
    My thoughts are with you and your sweet family during such hard times. Know that prayers are being said and good vibes sent your way.

    Like

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