Sunday, September 4, 2011

Silence is golden.

*beepbeepbeep beepbeep* *beepbeepbeep beepbeep* A few seconds pass then *beepbeepbeep beepbeep* *beepbeepbeep beepbeep* all over again. This is one of those background noises that soon becomes so annoying it's all you can hear. Now, Rambo's equipment makes a lot of noise. But most of it is constant. The humidifier always has a low vibration humming that you don't realize until you turn it off to refill the bottle; then suddenly you become aware of the silence you've been missing. Other things like his nebulizer and suction machine are loud but only occasional. 

Then there's the beeping. 
The bane of my existence.

*beepbeepbeep beepbeep* *beepbeepbeep beepbeep* 

Are you starting to feel my pain yet? This beeping comes from an unfortunately necessary item: the pulsox. The pulsox measures the amount of oxygen in Rambo's blood. It's a little 'probe', for lack of a better word, with a light that goes on his foot or hand. And it's there all. the. time. 24 hours a day. Every day. The point of the pulsox, obviously, is to alert us if Rambo is not getting the amount of oxygen he needs. This could be due to many reasons: needing suctioning, wheezing in his lungs, needs repositioning. See - necessary. 

The problem with this vital piece of machinery (*beepbeepbeep beepbeep* *beepbeepbeep beepbeep*) is that it's almost never accurate. It doesn't read correctly if he's moving. So obviously it makes TOTAL sense that is should go on his hand or foot. Now, for accuracy sake, I should tell you that it could be placed elsewhere. Like, his earlobe. Something tells me that's not going to be any better. What child is going to let something be taped to his ear? Not this one. It could also go in other unmentionable places but I am just not willing to do that to this poor child. He's been through enough. So we are left with our best option: the feet. As I said before, it does not read if he's moving. His feet also get poor circulation at times so although the reading might be accurate for his foot it is not necessarily true of his whole body. As well as the fact that it has to be on just so for an accurate reading. In the hospital they would replace these daily. Sometimes two or three times a day depending on how they were working. Here we get 4 a month. Tape has become our new best friend. 

Here's the real kicker. It's absolutely THE machine you want when it does alert you to a real need. This has happened a few times since we've been home. Well, we're working on being home 5 months so maybe a little more than a few. I would say an average of two to three times a week it alerts us to an actual need. But for all the *beepbeepbeep beepbeep*ing it does - it's not worth it! Except that it is. 

What the pulsox really needs is a remote. How much simpler that would make my life! But, alas, that would cause for much liability. Not to mention, defeating it's own purpose: getting up and checking on the child. So we are left getting up and hitting the silence button over and over and over and over again. 

Being a bionic baby is cool except for the noise. I can't take the noise!! *beepbeepbeep beepbeep* *beepbeepbeep beepbeep* Silence is a commodity I will never take for granted again. If I ever get the chance. 

So as you sit down to watch a movie or eat a meal or read a book or take a nap or do whatever you do in silence- think of me. Think of me and the constant incessant beeping.