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Saturday, March 14, 2015


So last week was a bit of an eye opener...

I woke up on Tuesday morning with a slight cold and some asthma issues.  Not a big deal, I just declared the day to be "Watch as Much TV As You Want While Mom Sits on the Couch and Does Nothing" Day.  Except that, a few hours later, I realized that my asthma was getting worse.  Fast.  I called my mom and asked her if she could come help with the kids because just keeping them alive that day was obviously going to be more than I could handle.  She quickly arrived and despite a nebtreatment and over a dozen puffs of my inhaler, my breathing was quickly deteriorating.  At one point, while sitting on the floor, I tried to stand up and was immediately very dizzy, to the point where I couldn't even keep my head up.  At that point, my mom called 911.  The kids thought it was cool when the ambulance came to our house and took mommy away.  I ended up staying the night in the hospital and my mom babysat for us until Hubby came home for the night.

So the point of that kind of boring saga was that I realized how unprepared I really am.  As I sat on the floor with an oxygen mask on my face while the EMTs got ready to take me to the hospital, all I could think of was how much I needed to tell my mom about taking care of Little Dude.  Thankfully, I had an outline of his feeding schedule written up already so I could just hand that over to her, but when it came to his tube care, his skin care, his breathing issues...that's all stuff that I do everyday and I know exactly what works and what doesn't work with him.  I know what to watch for and when to change something in his routines.  I know what therapies he needs to work on that day and how much he can handle.  I realized that I'm the only person who knows how to fully take care of him. 

Also, the thought that I could've been alone with the kids when I nearly passed out and was unable to even reach for my phone is a terrifying thought.  Thank God my mom was there when that happened.

Because of my severe asthma, I've often had to rely on others to help me out.  I hate having to be dependent on others and constantly ask for help, but I don't have a choice.  And now that I have four kids, one of whom is medically complex, it bothers me even more.  My asthma has nearly killed me on several occasions, and I've always been very aware that I have a potentially fatal disease.

If something were to happen to me, I need to have the peace of mind that Little Dude will continue to receive all the care he needs, but his care is complicated and I'm the only person who knows all of the details.  Over the next week, I'm going to put together a word document detailing everything I can possibly think of regarding his medical conditions, his feeding, the storage of his supplies, etc and print it off so anyone who needs to take care of him can do so.  I already have a binder with an overview of his medical history and the names and contact info of all of his specialists, but I definitely need more information on the day-to-day part of his care.  Every month or so, I'll need to update the word document, but will be able to easily do so and then print off an updated copy. 

And just to end things on a good note, I put new batteries in our ball popper and Little Dude was a huge fan :)

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