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....

Thursday, November 10, 2011

Day 16 Post MGH / 29 Post Inova - When it Rains it Pours

Tonight I went to a viewing of a friends wife.  I never met her but he was a dear friend of mine from the ice rink I used to skate at in high school.  During my freshman year of college he listened to me complain about my roommates whenever I wanted - day or night.  He was a huge help during that year.  We've maintained sporadic contact, via the computer, through the years and was glad to hear when he fell in love and then got married.  I remember when his first was born and shortly afterwards he had two more.  Two days ago I was informed by a mutual friend that his wife had died.  I knew she had had some problems over the past few weeks by reading his facebook postings but was shocked to find out she had passed (it was very sudden and unexpected).

It saddens me that this is the second time in 1 week that I have attended a memorial service/wake.  It weighs very heavy on my heart.  Both of these families have young kids and it's terrible that they have had a parent ripped from them.  It was nice to see my old friends today though.  Our mutual friend was also there and we were all able to have a good talk about "old times."  I met the other friends wife as well.  I am just so glad to see that these 2 guys found great wives and had wonderful families.  I just wish it could have stayed that way.

It also saddens me that since Trey went into the hospital I know of 2 people that have started chemo treatments.  One just found out of the cancer that riddles her body and she is going through chemo and radiation.  The other had known for a short while but was just recommended to start chemo treatments.

It's really all too much right now.  Not only do I have this cardiac thing with Trey going on but my heart breaks for these families that are having to go through such pain as well.  On top of it, Trey came out ok.  These other families may not.  Two already are being forced to live through life without their loved on and the other two are faced with fears that I can and can't imagine at the same time.  I'm ready for it to stop pouring.

On a more positive note (sorry for the depressing post... I'm just sad for these families right now), Trey did not throw up today.  He still did not take anything from his bottle though and somewhere during the day we lost a feeding.  Also - mother of the year award will not be going to me this year - I accidentally ripped Trey's feeding tube out of his nose when taking the car seat out of the car.  I was all excited we are becoming more mobile - I got my hair cut today and took Trey's backpack along to do his feeding.  In the car I put the backpack to the side of the car seat so that it wouldn't fall on him (I was going to keep it in the seat with him).  When I got out of the car I totally forgot he was getting a feeding and just picked the seat up while the backpack stayed in the car.  As I took him out the tube slid out from under the tape and out of his nose.  The car ended up getting a small amount of tube feeding... oops.

I gave him some time to go tubeless since I'm sure I traumatized him when it got pulled out.  I figured I'd give him a break before upsetting him again by putting it back in.  When I finally did put it back in I taped it using some cloth tape instead of the Tegaderm film.  A friend mentioned that the cloth would breath better and let his face heal more so I figured I'd try it.  It just doesn't look as pretty!  It was easier to tape on using the cloth tape though.  The reinsertion didn't go that bad and he got over it pretty quickly.


Tubed again.

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