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....

Friday, October 21, 2011

Day 9 (home) - I actually miss the hospital....

So I'll be totally honest here - I miss the hospital.  I miss the structure, the people, the easiness of it, etc.  Don't get me wrong, I love my life, I love being a stay at home mom and I love being home with my family too but after spending so much time at the hospital and getting to know some of the people there I feel like something is "missing."  I am, however, thrilled that Trey is doing better and that I'm not constantly worried that something is going to happen and we are going to lose him.

Today was a good day for him though.  We again, had no throw up episodes, so either the Reglan is working or the extended continuous feed at night (12 hours instead of 8).  I think it's probably a combination of the two.  I definitely can't say I don't worry at all though.  I wrote the above paragraph downstairs.  I then came up to get Trey and I ready for bed and while I was changing his diaper I noticed he was breathing pretty heavy.  It seemed labored for a second and I could feel my heart take a dive.  It's that fight or flight feeling you get in your chest/stomach.  I watched him for a second and very quickly his breathing became normal again.  I can say though it's not a constant worry.  While he was in the hospital in the beginning my body just didn't relax.  I was anxious all the time.  There are times that I've been able to relax a bit now.  This morning we watched a movie while I ate breakfast and he had his meal through his tube.  That was nice.

So today we drove back down to Fairfax to get Trey's medicine.  His Methadone is a compound  and it has to be specially made.  That is why we can't get it around here.  We even tried to get his Valium the other day around here and the doctor couldn't find it in stock anywhere.  They tried to call some specialty pharmacies closer to us but they wouldn't be able to get it ready before next week.  Since I didn't think we had enough Methadone to last us through the weekend (since we stalled the wean for a bit we're using more than we originally thought we would) we had to drive back to Fairfax to pick it up.  Thankfully, this is the only time I'd have to do that since the hope is that this is his last Methadone/Valium refill.  We drove close to the hospital and it made me think of our time there.  I can't say enough about the nurses and doctors we worked with at that hospital.  They really made our time there bearable.  I feel like I should be bringing him up there to show him off - look all, look how good he's doing!

One thing though I do feel bad about is that my other son, Bryce, is sick right now and I just don't want to deal with it.  I'm afraid of getting to close to him and that I'll catch it or Trey will get it.  He threw up last night at my in laws house and then again twice at our house today.  I feel terrible that I've just turned myself off to him... but a stomach virus would just sink me right now.  Please include him in your prayers tonight that he feels better.  I really have never seen him in this much pain before.  He sat on the couch today with a heat pad, just clutching his stomach and groaning.  My mother has been here this evening and she has really helped with cleaning up and taking care of him.  She's been an absolute godsend.

Again - It's about 1 am and it's time for a Valium dose (for Trey... not me... unfortunately!)

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