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....

Saturday, November 12, 2011

Day 18 Post MGH / 31 Post Inova - Home for 1 Month!

It's November 12 and we have officially been home for 1 month!  It feels like we've been out of the hospital for much longer than that though.  This past month has been one of the longest months of my life.  Trey is now 4 1/2 months old and his birth seems like ages ago.

Today was an interesting day.  Trey threw up in the middle of David giving him his medication.  Since it was less than 15 minutes we're supposed to give him the medication again although we weren't sure how much was left over in the tube (the tube holds about 3 mL of fluid), so we put a call into the cardiologist to see what we should do.  We didn't want to overdose him but we also didn't want him to miss out on a does of his medication because we didn't know what that would do.  While I was changing Trey out of his messy clothes I noticed that Zena (the dog) was licking the mat around Trey's head.  I moved her out of the way and that's when I noticed the cap to the feeding tube was open... yes, Zena very well may have been lapping up Trey's heart medication.  What a mess in so many ways!  

Well, the Dr. Kilgore, the on call cardiologist, had us give half doses of all of his medication.  She said that it probably wouldn't have hurt him to miss a dose but it also wouldn't hurt for him to get some of the dose... we just didn't want to overdose him by giving the full doses again.  We decided to just keep an eye on Zena and 12 hours later she seemed to have survived just fine.  

Today my cold seems to be materializing into something,.  My chest is pretty congested and I'm coughing a lot. I'm just hoping that this is as bad as it will get.  It would be nice if this was the turning point of the cold and I started feeling better soon.  

I finished up the gravy for Thanksgiving today and tomorrow I'm going to start planning out the cooking schedule.  Ideally I'd also like to start straightening up and decorating for Christmas this week as well.  Thanksgiving is always such a busy day and I usually just want to relax the weekend after Thanksgiving.  This year it would be so nice if we didn't have to decorate that weekend... I'd love to just be able to be done, enjoy the decorations and relax.  I figure we can put the tree up and decorate the outside of the house the week after Thanksgiving.  I'll have to see how tomorrow plays out though.  That will dictate how the rest of the week will go.

Daddy's little rookie sleeping in true Trey style - with his hands up above his head

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