The O2 dilemma

So it goes without saying that we want to get rid of the O2. The cumbersome cords for the pusle oximeter, air tube and tank slow us down, irritate him and prevent easy travel. That being said, its tough for us hypersensitive parents to break the chain.

Cash is constantly pulling on the nasal canula, rubbing his nose and getting ticked off by the uncomfortableness of it all. I couldn't imagine. On the flip side, Kim, Savy and I are always worried about the tube getting pinched, the pusle ox having power, the tank leaking or falling etc... Its a pain in the rumpus!

We are trying to keep the O2 off Cash as much as possible, without tiring him out. Usually thats about 5 hrs a day. Sometimes when we dont have OT or PT we can pull off 8 hrs. We really need to get him to a full day before July 5, our next OCRG test, but thats probably not gonna happen. It is what it is.

To give you an idea, think about how much it takes to move a newborn; all the stuff you gotta load up in the car. All the prep thats needed and checklists to run through for a "normal" kid grows by 50%.
So you got the usual stuff; baby bag and all the stuff in it, strollers, car seats, toys, pacifier etc. Then add to that an air tank, a pulse oximeter, the cords for both, a tank carrier, placement of it all, proper placement of the nasal canula, tape for the nasal canula, the air tank key and make sure there's enough O2 in the tank to last the entire trip. Then while traveling, hearing the monitor beeping will drive ya nuts! Like I said, a real pain. I couldn't imagine those who must do more than us, with wheelchairs etc.
God bless them all.

My youngest brother is getting hitched next weekend, and we are making the trip down to the ceremony, but Kim and the kids are coming back immediately afterwards strictly due to the O2 and pulse ox monitor. The monitor beeps everytime he yawns, needs to burp, passes gas or the sensor is hardly touched. This amount of beeps would drive a hotel guest crazy, and since the volume cannot be lowered, it would keep not just us up all night, but our hotel neighbors as well. So it goes, just gotta cope.

My point is not to whine about the situation, but to explain why we gotta get him off this O2 assistance. As soon as we do, we are gonna start making some road trips. I'm seeing a tank free Cashmonster in Austin, eating at a taco trailer and walking south Congress. Maybe taking a train ride at Zilker. Going to the Houston zoo or seeing the coast for the first time. I cannot wait to explore the world with him, introducing him to more than just a doctors office, hospital or our living room.

The time will come when we can sleep all night, wake up refreshed and ready to take on his other challenges without being exhausted from the rough nights sleep before. The time will come when we can have someone watch him and not be scared by seeing the extra baggage he comes with. The time will come. Patience. Breathe.

I slept for shit last night. Ha!


On the bright side, Cash loves to play. His nurse Ms. Rhonda has taught him to play peek a boo. Here is a quick clip of him being a ham.