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, October 22, 2011

Day 10 (home) - Congestion

So today I noticed that Trey has been more congested and coughy than normal.  He coughs and coughs but doesn't seem to get anything up... but you can hear that something is there.  I really hope that nothing is wrong.  It could just be a simple cold but again, that's what we thought it was before we found out his diagnosis of ALCAPA.  This whole worrying about my kids thing is new for me - I usually trust that things will work out. I rarely take my kids to the dr. for being sick unless there is a need.  I'm pretty laid back.  Heck, people used to tell me that they didn't believe that Bryce was my first because I didn't worry about things.  Well, this whole heart thing is different for me.  I am worrying about everything!  I don't know if it's a cold - or some kind of serious condition that I should be on the look out for.  Thankfully I spoke to my best friends husband tonight and he did reassure me that things were probably ok.  His color is good and his breathing isn't labored.  So therefore his oxygenation is ok.  I think I'll wait to see how he is doing tomorrow and go from there.

Today we went to my parents to celebrate my brothers birthday with the family.  It is the first time that we have traveled with Trey.  Since we still haven't received the backpack for the feeding pump, we had to bring the IV pole with us.  Thankfully it folds up it could be put in my big tote.  We also had to bring all of his feeds, which of course I'm not used to because I usually nurse... gosh, nursing is SO much more convenient when we go out!  It was a successful outing though.  We did the feed at my parents house and gave him his Valium there.  Trey did have a throwing up incident during his feed but I think he gagged himself by coughing so much.  Again, different than the other incidents he had last week.  Last week he would just start retching.  The 2 incidents he had this week after starting the Reglan seem to have reasons behind them.  Either gagging himself with his hands or by coughing.  So I think that's an improvement.  We had a nice visit and all of the boys were thrilled to see their Uncle Mike.

The older boys spent the day at my parents house today.  I called them around noon to see how Bryce was doing.  Apparently he woke up feeling much better.  He gave the thumbs up when asked how his stomach felt.  This made me feel much better.  I'm glad that it just seemed to be a 24 hour bug. Both boys asked if they could stay at Grandma and Grandpa's house overnight again and so they are going to come home sometime tomorrow.

Today I gave the dog a bath.  She was not too happy but she needed a bath before she got her Frontline for the month and it was definitely needed!  Last night I found 2 ticks on her... yuk!  Tick season has begun.  They are getting ready to go dormant and looking for a last feed before hibernating.  Those suckers are really nasty!  These pictures are for Dr. Callahan.  Totally forgot about having to give her Frontline and Heartguard too... so just keep in mind, I'm kind of at my limit for medications in this house! ;-)

Oh look - Valium time again.  I usually update the blog at the end of the night after David has gone to bed.  I stay up and do the 1 am Valium dose and David gets up early to do the 6 am Methadone dose. I'm looking forward to Tuesday when we go to a 12 hour schedule, rather than an 8 hour schedule. Then I'll be able to go to bed at a better time.

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