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Monday, April 11, 2011

Any Given Day

One thing about this life is that any given day the odds of something "going wrong" are not in your favor. Like today. Ella recently had a port placed for easy IV access and we were due to flush it for the first time, which has to occur monthly when it's not in use.

Our attempt at home was unsuccessful so off to the ER we went. For me, this made for quite a frustrating day. My tired and frazzled self loaded up Ella and all her gear and headed for the hospital. While we were sitting there waiting I was watching Ella as she looked around and grinned from ear to ear. She looked very pleased about the "change of scenery" unlike her mom.

As the parent of a developmentally delayed child, one of the things I am most adament about is that I do not want anyone to feel sorry for Ella because of her disabilities. (I discussed this in a previous post about empathy versus pity.)

I actually think we can learn a lot from special people like Ella. One of the reasons I believe she shouldn't be pitied is because she is so happy! Ella doesn't understand all that she has been through. She doesn't care that she has to spend her afternoon in the ER. She's just happy to go somewhere whether it's to the hospital or a party.

Wouldn't life be so much more enjoyable if we all had the ability to not let the stress and complications of everyday life get to us? In my opinion, that is a blessing. And who could feel sorry about that?

Ella in the ER waiting today.

Monday, April 4, 2011

Space Invaders

Having a medically fragile child takes over your house. When we first brought Ella home from the hospital after receiving her trach and the medical supply company started bringing in all of her equipment and supplies I said, "This is an awful joke someone has played on a person who hates clutter!" Thankfully we had recently moved from a two bedroom townhome to a larger three bedroom house or I probably would have run away. Our space had been invaded.

I'm sure most parents feel somewhat invaded by the amount of "stuff" you end up having around after you have a child. In addition to all of the normal things children have, we also have Ella's medical-related stuff piled on top of it. Our living room resembles a mix of romper room and a hospital room with toys and such strewn about alongside a feeding pump, suction machine, nebulizer, pulse ox monitor and CPT vest machine. In the kitchen there is a regular pharmacy with tons of medicines and syringes and feeding supplies. Upstairs in Ella's room there is another suction machine and her ventilator and heater for when she sleeps. Our laundry room houses the monstrous air compressor for when she needs oxygen, and both the closet under the stairs and the one in Ella's room look like medical supply warehouses.

Beyond the stuff, there are people who routinely invade our space including Ella's nurses and therapists. I don't mean this in a negative way, but it's not often that there isn't someone other than just the three of us in our home. People often want to know exactly "how it works" with the nurses so I'll tell you. In the beginning Ella received nursing care 24/7 so there was literally a nurse here every hour of every day. It did take some getting used to and sometimes still does. It's kind of a catch 22 because you WANT them here for the help but you also get really tired of having outsiders in your home all the time. Not that we would want to walk around in our underwear or anything (well, I can't speak for John), but you do have to be mindful that you have "company" and maybe watch the things you say, wear and do.

We now receive 77 hours a week of nursing and can plan whatever shifts we want depending on our schedules. For the most part, we have someone here with Ella for about 8 hours a day on weekdays so that we can work and run errands. On the weekends we try and have overnight shifts so that we can go out as a couple and sleep in which is nice. When the nurses are here their job is to take care of Ella so they sit with her, play with her, suction her, feed her, change her, bathe her, perform trach care, and give her medicines, nebulizer and vest treatments. I have to admit I am a little spoiled since I hardly ever have to give my child a bath. (Bathing a child with a trach isn't the most fun thing to do in the world!)

Some of our nurses even go as far to do Ella's laundry. And they are also good about helping me keep track of her medicines and supplies. But you can become too dependent on the help which is when problems sometimes arise; that is something I have had to learn. There is also a fine line between invading their space and letting them do their job and wanting to take care of or spend time with Ella myself when they are here.

The rare times when it is just me, John and Ella can feel strange. And then of course John and I have to figure out how to divvy up the responsibilities ourselves, but we make it work. Speaking of, it's 9 o'clock and I'm pretty sure it's HIS turn to draw the medicines...