Thursday, November 11, 2010

A day in the life of a RettMom.

A few years ago another Mom posted a 'What it's like blog' on Myspace and I remember thinking things weren't so bad for us and I felt bad for her. Abby slept through the night. She walked, she ran. She could still sign and had a few words. She was eating like a frat boy. I thanked my lucky stars that Rett Syndrome didn't hit us like it did other girls...little did I know what was coming. I had no idea that sometimes it takes years for everything to hit.

Most days there is so much that I can't remember it. I have been thinking about this post for days and the last few have been a pretty much the norm. So this is for all of my husbands friends who complain that I don't work. For my family who spends hundreds of dollars a week at restaurants and invites everyone but me and my daughter. For those who blame my laziness on our generic toilet paper and meals cooked in bulk and eaten till their gone. Usually consisting of a hamburger or tuna concoction. Man I hate hamburger and tuna!

Tuesday 230 pm. I pick up Abby from school early to go get labs done. We are finally checking EVERYTHING to try to make her as comfortable as possible in her little body that does nothing she wants it to. Looking for any chemical reason she vomits, gets impacted,and or has constant diarrhea. Anything that can help us get her on the right meds so she stops having her tremors and stops breathing. Yes stops breathing.

Earlier this year they discovered.."they" being the medical world..that Rettgirls don't hold their breath because they can. They're brains are actually not telling them to take that next breath in order. For Abby this happens about 5 times a minute. 5 X 60 is 300. 300 X 13 hours a day that she is awake is 3900 times per day. Not to count the apnea she has in her sleep. Usually about 130-160 minutes of non breathing over a 9 hour period. Is it no wonder I do not sleep?
At the doctors office we bag her..I will not catheterize my daughter unless there is a dire need. Never again. We wait for an hour for her to go.

We take that sample to the hospital lab where we wait for and hour and a half to get called back. When we finally do the tech fishes for veins until I stop the process. She obviously doesn't know what she's doing and my daughter is not a pin cushion.

By this time Abby has missed her afternoon tube feeding and is hysterical with hunger so she screams at me all the way home in her language that only she understands and I cry right along with her.

I get her home and put her in her chair for her feeding. After I have plugged the tube into her stomach I take a few minutes to tell her father about the day. When I go back to sit with her during her feeding..to make sure she doesn't vomit or retch and aspirate she is slumped down, head on her chest..snoring. 3 hours before her normal bed time. I too am exhausted but I have to wait another 3 hours before I can give her her night time meds. So I turn on the monitor and go about doing all my household responsibilities and preparing her school bag and meds for later that night and first thing in the morning.

At her normal bed time I give her her 3 meds and accidentally wake her up. Oh man I didn't mean to. Now it's party time. She's had a nap and is so thrilled to see me. She kicks her six year old legs like an infant while constantly gnawing on her folded, bent and clasped hands. Giggling away. Happy as she can be and wide awake.

I finally get her back down about 1am. Deciding that I will not send her to school the next day on no sleep and that we will go back to the lab to try again. I sit on her floor with my back against her dresser, knobs hitting me in the back till I hear her breathing evenly and waiting for her little hands to stop moving so I know she is actually asleep.

I wake up 2 hours later. Sideways on her floor because she is whining and whimpering. It's cold and she has kicked her blanket off. Since she can't use her hands she cannot reach down and pull it back up. I crawl to my feet and tuck her back in and kiss her pretty little head.

2 hours go by and the blankets are off again. She is crying and cussing me in her own little language. Now her bed is wet. 5 am. No way that I can change her and her bed at this time without her fully waking up so her and I head off to my bed after a quick change of diaper and pajamas and a foaming bath in a pump wipe down. We don't wake her father. He doesn't even try to sleep in our room anymore. He's down on the couch in the living room.

Ok 530. I can still get a few hours of sleep before the labs start all over again. Think again!
Abby's 18 year old brothers alarms start going off at 6 am in the room next to us. He has 5 alarms that go off because he is IMPOSSIBLE to wake up in the morning and is so close to getting dropped for chronic tardiness and absences that we have to make sure he misses not even one more day. Not one more class or he will not graduate.

By 630 she is up. Smiling at me and licking my face-her way of kissing me. She is trying to raise herself up and is in full party mode. Ecstatic that she is in bed with Mommy and ready to start her day.

I turn on the TV for her while I change her bedding and run her bath. Hoping her brother has left us some hot water. Careful not to start the washer until I have her cleaned up.

I carry her to the bathroom..sideways because our bathroom was apparently built for no more than one tiny little pixie person to be in at a time and lower her into the tub..carefully as to not pull my back out again.

I take her back into my room so to not lay her down on her cold plastic hospital bed mattress and dry and dress her. She smiles at me while I take 20 minutes to wrestle her into her clothes,braces and shoes with no help from her. She can only lay there and smile.

I take her downstairs. One step at a time. She is 4 feet tall and 44 pounds of hanging weight. I turn on Nick Jr and start the feed and medicate process once again. An hour later we are off to the hospital . Ont he way there I steal a glance in the mirror and realize I look like something from the movie The Ring. I run my fingers through my hair and grab a baby wipe out of her bag to wash my face.

At the hospital we sign in and lucky us no one can find the paperwork from the afternoon before. The other tech had said she would leave it and all the counted and tagged tubes in a bag for the morning tech. No one can find them. So we wait for 2 hours in the waiting room. Annoyed,exhausted. At least I am. Abby's happy as a clam singing and screaming for what she thinks is people all there to listen to her scream, giggle and break into hysterics. At least it's happy hysterics this time.

The check in lady can tell that I'm about to lose it..she can tell because she knows us by face and name. Not because we are friends but because she has seen us so many times.
She finally goes and gets the tech and they take us back to the lab and sit us in the strap down chair. After stupid me has carried Abby all the way through because I left her wheelchair in the car thinking we would be in and out. You'd think I would have learned by now. My back is killing me at this point.

So we sit as she leaves the room for half an hour because she has to retype all the labels for the 9 tubes of blood they are about to take from my daughter. Luckily she hits the vein the first time and it is over with quickly. I watch Abby's face to make sure she doesn't go pale or pass out.

Yeah we're done! I carry Abby back through the hospital and out to our 12 year old van and lean her up, pinning her between my leg and the van while I catch my breath before I lift her up into her car seat. Again with no help from her. I am so exhausted and fed up by then I just want to pull over and cry...or pass out. But I can't because I'm smiling and laughing so hard. Abby has the hiccups. With each jump of her chest and squeak from her mouth she bursts into uncontrollable laughter.

I love that girl.

I drive us home and get her settled on the couch while I grab a sandwich. It's 230 and the first time I've eaten since the afternoon before.

24 hours in a day in my life. How was yours?

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