And now that we are home….

I have to say I am pretty shocked at how totally exhausted I am.  The great thing about being home is that you get to see your family, eat good food and sleep in your own bed BUT  now you don’t have any nurses to help you.  As of last night I had already changed the bed twice, washed several loads of laundry and had to deal with a clogged kitchen sink.sle

I mean really, a clogged sink.  I woke up this morning to see all this disgusting black thick tar like substance pooled in my kitchen sink.  I asked Lou to clean it up for me up but after a few minutes he hadn’t emerged so I decided to do it myself.  So impatient.  Big mistake.   I can’t remember the last time something gross made me gag but I literally started dry heaving and had to run to the bathroom and put my head in the toilet.  WELCOME HOME!  Lou came looking for me and was shocked I was almost throwing up, but finished the job for me.  Luckily the plumber showed up and fixed the situation and now I can clean all my dinner dishes that are piled on the side of the sink.  Yay me!

As for Tiara, she sleeps most of the time.  I was able to get her to eat 4 grapes. a slice of a soy cheese quesadilla and 4 spoonfuls of coconut milk yogurt along with some lemonade and water.  Not much for someone who has to take 42 pills a day to survive but hopefully it is enough to prevent her from vomiting.  She slept pretty good last night but I did not.  I finally got in bed and realized I hadn’t done the breathing treatment.  I got back out of bed and hooked that up and finally got to sleep at 11am.  The problem is that the nurses don’t come in the check her during the night at home so I kept waking up to check her oxygen level and make sure the nasal cannula was still in her nose.  Rather daunting not to mention changing her diaper without any help.  She is still too weak to walk and if she leaves the bed I have to transfer her to the wheelchair and push her from room to room.  Luckily our house is small and the oxygen reaches to every room.  She is able to sit up but not for extended periods of time.  The good news is my skin looks really good since I haven’t worn make-up for 3 weeks and I lost 5 pounds, we won’t discuss the black circles around my eyes, I am ignoring that.   Always looking at the positive in every situation.

Have a wonderful day!

xoxo tiffani

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