September 26, 2010

...But At Least I Got Free PopTarts

Last week was pretty much terrible. I'd like to think that there was a silver lining in it somewhere, but the closest thing I could find was the fact that I got a free package of strawberry PopTarts.
Let me start by informing those of you who aren't members of my family (so basically, my other two readers) that my son has been starting up again with some noisy wheezing and apnea spells. This is certainly a far cry from their predictions two months ago when they assured me he would "outgrow this" and that the reflux medication "should make a big difference". Well, he didn't and it didn't. So his ENT doctor decided he should be admitted to the children's hospital so they could do some testing and see what they would come up with. At this point, Owen's team included doctors from: GI, ENT, pulmonology, cardiology, surgery, and speech pathology. That's right, 6 specialists - not including the cycle of residents, on-call pediatricians, and student doctors. You'd think that with that many people working on the mystery, they could come to some sort of reasonable conclusion?

That sort of optimism was my first mistake. We got there on Tuesday night, stayed through Friday night (which WOULD have been longer had it not been for my redheaded determination and sheer panic at the thought of having to spend yet another night crammed into a Chinese torture device disguised as a plastic blue recliner) and in that amount of time, they did two whole tests. Combined they could not have totalled more than 2 hours. So, for those who are bad at math, in the nearly 72 hours that we spent there, 70 of them were in our room zoned out on Disney movies. Now multiply that by the amount of fun it is keeping a newly-mobile 9-month-old confined to a crib with one lousy toy that lost it's musical ability probably three sick kids ago and, well - it was nothing short of miserable.

I understand that doctors aren't magicians. I understand that with that many doctors involved, it takes a while to get everyone together and to determine what needs to get done. But the sheer lack of communication was starting to become apparent on Thursday night when I had been given discharge papers when, in fact, we were not being discharged. They could not find the apnea monitor they were going to send us home with, they could not get ahold of Owen's pediatric surgeon who had ordered a CT scan but with no notations on why or when it should be conducted, and they could not explain why my son had suddenly started to projectile vomit within 5 minutes of receiving those false discharge papers. So we stayed another night until the mess (both paperwork and puke) had been cleared up. I assumed I would be on my way the next morning.

Darn that optimism.

The next morning I come to find out that not only would the apnea monitor not be arriving until around 2pm, but that it is hospital protocol to keep patients on the apnea monitor - at the hospital - for an additional 8-10 hours to ensure it is being used properly. I don't often use acronyms but seriously, WTF? You turn the thing on, if the green light is blinking your kid is breathing, if the red light is blinking and the alarm is blaring so loud it could wake up your neighbor 5 doors down, your kid is not breathing. Does it really take people 8-10 hours to figure that out?

After some persistence and a free token to use in the vending machine (my well-earned PopTarts), I managed to convince them that I understood that green light good, red light bad, and they agreed to discharge us. Again. Owen was so excited he vomited all over everything in the entire room.

And after all of that, the only thing they could do was to up his reflux medicine - something they had planned to do long before he was admitted in the first place. Frustration would be an understatement. And the cherry on top of this disappointment sundae? It seems that the higher dosage of meds is what is causing the projectile vomiting.

So now, I'm overwhelmed by the possibilty that they might not be able to figure this out. He has an amazing team of doctors, so it can be a little disheartening to hear one of them say "I'm sorry, we just don't understand why."

I'll be putting in a few phone calls tomorrow, but I've learned my lesson on the optimism. I'm not sure what to expect now, but I know that I have to keep trying - Owen sure can't do this on his own. Who knows, maybe I can swindle them out of a few more PopTarts in the meantime.

2 comments:

  1. So sorry to hear that. I hope Owen feels better soon. He's got busy days of mohaking it up to get back to!

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  2. this is so heartbreaking to read. i can't even imagine how hard this all has to be. keep fighting mama!!!

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