Trey was born on June 24, 2011 and was diagnosed with ALCAPA, a very rare congenital heart defect, on September 12, 2011. This is the story of our journey.
Please feel free to email me (Randi) if you have any questions or comments: treyheart@gmail.com
Please excuse any misspellings or grammatical mistakes. I'm usually writing from the hospital on my netbook while my mind is just running....

Sunday, October 23, 2011

Day 11 (home) - Throwing up... again

So today started off with Trey throwing up again.  It's getting very frustrating again.  It's an absolute awful thing to watch.  He looks so terrible and scared when it it happening.  He also still has a terrible cough and sounds very congested.  We all seem to have come down with a cold as well.  I have just a touch of something, my nose is a bit runny and I have a headache but David feels pretty crummy and Cole's nose is a faucet.

This afternoon I made a mistake with Trey's medicine.  I was busy, trying to do too many things at once, and accidentally thought he was due for a dose of Valium at 2.  I gave it to him and then went to check off the medicine on the sheet I have to keep track of everything.  Well, while checking the medicine off I realized it was supposed to be Methadone instead of Valium.  Oops.  I immediately called our home nurse who had us call Dr. Callahan, his cardiologist.  Thankfully he wasn't too worried.  He told us to skip the Methadone dose and keep a watch on Trey and make sure he didn't get too drowsy/out of it.  He figured that Trey's body was probably used to even more Valium than we gave him today so his body wouldn't react to the accidentally overdose, especially since the doses were given 4 hours apart.   He said that if he got cranky at 6, which was supposed to be his next does of Valium, we could give him more (which he did, so we did).  Otherwise, just wait until his next scheduled Methadone, at 10, to give him any Methadone.

Needless to say, I felt horrible.  I can't believe I made the mistake.  I had things in place to make sure that this wouldn't happen but I got too comfortable, thinking I knew what to give next without looking at my checklist.  It was a silly mistake and thankfully it didn't turn out to be too dangerous of a mistake but I will definitely be more careful in the future.  Today started his Valium wean again though.  We went from .8 mL  to .7 mL, every 8 hours.

The other boys came home at around 3 o'clock and Cole and I went shopping for Bryce's Halloween party at school on Friday.  For snack, I'm making Witches Brew in a cauldron.  It's a trail mix using peanuts, pretzels, chips, M&M's, chocolate chips, etc.  The kids are going to dump the ingredients into the cauldren one by one and they will be labeled as different icky ingredients.  For example, M&M's are owl eyes, candy corn are chicken toenails, mini marshmallows are ghost guts, etc.  I'll have to post the list of everything once I get it all organized.   

Trey also threw up after his 6 o'clock feeding.  He just started his overnight feeding and I'm all worried that he's going to throw up sometime in the middle of the night.  I'm so incredibly tired and I'm sure I'm not sleeping well.  Tonight I'm pretty sure I'll be sleeping even worse.

It's now 1 am - I just did the nightly Valium dose and he is extremely fussy.  Poor kid.  Plus, I got peed on when I changed his diaper just now.  That's always fun.  Well, off to calm him down and hopefully get some sleep tonight.

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