Saturday, June 27, 2015

Cords, cords, and more cords! Cords Suck!

Cords Suck!
When our boy gets the slightest hint of an illness, that means all of our "extra" cords and machines come out from storage and back into our living space.
Back on oxygen, and O2 monitor

Nebulizer treatments

 Just over a week ago, dad came home from work and was not feeling good. A few days later, I got the same thing but not as bad. A few days after that, this kid started showing signs of getting sick too. We took him in to see the doctor and decided to keep him out of the hospital, but start a very intense preventative routine at home.

The routine looks like this: 
  • Stop all oral feedings and run everything through the gtube, at a slower rate then normal. If needed, switch to pedialite and stop formula.
  • Start oxygen during the day and increase it at night through the bipap.
  • Give nebulizer treatments, with 2 different medicines, and inhaler treatments along with chest therapy, 4x per day.
  • Give more nebulizer treatments every 4 hours at night, if coughing.
SO now it takes 1.5 -2 hours, to get one feeding in. It takes about 15-20 minutes to the nebulizer and inhaler treatments. Add another 18-20 minutes for the chest therapy. And that folks, takes up most of the hours in a day. Not to mention the fact that we are restricted to how far the oxygen tubing will reach.

Now we do have ways to make everything portable, if we need to, but we have limited time on all of it because an O2 tank may run out or a battery may die. It is just easier to stay inside.

I should mention that we have, and use, all of these machines already but most of what he needs on a normal day is just run at night. He has oxygen, and the O2 monitor run every night for his sleep apnea. He gets inhalers and chest therapy 2x a day, every day. And he gets fed every day and night...duh. 

I hate seeing him sick but he is responding very well to the added daytime routine so I think we will be able to stay out of the hospital! Yeah!!!

I am just taken back to when he was younger and needed this routine every day. I am so thankful for how far he has come. I am happy to be cord free during the day and forget very quickly how much it sucks to have cords. 
7-26-13 Hooked up to O2, monitor, and gtube feeding

This was a GREAT day!

When you are hooked to cords...
  • you trip on them. 
  • you are restricted to one or two rooms in the house.
  • your kids finds them convenient to pull on.
  • it is hard to go anywhere, unless you want to carry a lot of stuff around.
  • your living area gets a lot smaller and hard to move around in.

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