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 15, 2011

Day 3 (home) - Scared

Not such a great day.  Trey isn't really eating much by bottle anymore.  He just gets pretty cranky when we offer it to him and turns his head most of the time.  He woke me up throwing up again this morning and it scared the life out of me.  The discharge paperwork said to call if he started to "feed poorly" and we didn't know exactly what that meant.  I mean - he left the hospital "feeding poorly" and that's why he had a tube.  I didn't want to bother the doctors if he was just still "feeding poorly" so I called the nurses at Inova for their advice.  When he left he was eating on average about 60 mL from the bottle and tolerating the 120 mL a feeding (he's now throwing up after most feedings).  I spoke to Summer at Inova and she said that since he really hasn't been close to that since he left the hospital that it would warrant as feeding poorly.  She said to go ahead and check in with the cardiologist just to be sure.  I called the cardiologist on call and got Dr. Thompson.  He was mostly concerned with if he seemed dehydrated.  He seems to be pretty hydrated... eyes aren't sunken, soft spot isn't sunken, etc.  Therefore, right now he doesn't seem to concerned.  He said to watch how he does and call back if he keeps throwing up after his feeds.  That was after his 3 o'clock feed.  He did spit up a bit after 6 but not as projectile as the other ones.  Gosh, isn't this fun reading, eh?  

I figured at the bottom of each daily entry I will post his feeding for that day.  I know there are some doctors and nurses out there following my blog so any input... please... let me know!  I am petrified of not seeing a trend or overseeing a trend.  The "missed" diagnosis at Children's scared me and I know that lots of eyes can help.  I don't want to fail to bring something up to his cardiologist that could point to something that needs to be addressed.

On another note, my mom came over yesterday to help and she stayed over night.  My father drove down today to meet her and they took the kids out to a local pumpkin farm.  They had lots of fun.  My mother in law watched Cole yesterday (Bryce was in school) and my mom was able to help me get most of the house under control (well, really, she got it under control!).  I definitely feel a lot more "normal" in the house now.  I can devote my time to just simple upkeep and taking care of Trey.

My parents and the kids
(reminder to self:  turn TV off when taking group pictures!)

I have never been so nervous about something for such a long period of time in all of my life (well, except for when the sniper was here!).  I have a really hard time going to sleep because I'm petrified that I won't hear him spitting up during the night.  He gets continuous feeds overnight.  It's awful. 

Today he had a really tough time with weaning I think.  Most of this evening he was just plain cranky... but it's not really a cranky kind of cry, it's more of a something is wrong kind of cry, so I don't think it's just being fussy.  He's doing a lot of head bobbing, which I believe is a side effect of weaning.  His head turns from side to side a lot, which startles him and sends him into a fit.  His eyes are also pretty shifty, which is another side effect of weaning.  It's awful to watch.  I feel so terrible for him.  Especially when I feel helpless.  I try to console him and it doesn't work very well.  Sometimes it seems like he is finally calming down and he startles himself with a head bob.  This whole entire thing sucks.  He's getting fussier and plus there's a lot more laundry since he's throwing up on everything.  

It's hard to have been put through this whole ordeal last minute and now not sure if anything that I am seeing in him is something that may or may not be serious.  He was my coughy baby ever since he was born.  I just figured he came out with a cough and he was just coughy.  My eldest gets croup a lot and I just thought ... another coughy kid.  Well, apparently that was a sign of a heart problem.  Yes, it wasn't just me that missed that.  I understand that.  I just don't know what to push and what not to push anymore.  To me this is almost as scary as being on ECMO.  At least when we were in the hospital we had the support of the doctors and nurses.  Now I feel a little more alone and I don't know what really to look for.  Especially since he seems to be having more of a harder time at home than in the hospital.  It's very hard.  I can do this though, well, we have to.  Heck, I (we) are doing this... but I'm still scared.  

Here are the charts I did for his feedings...
Total mL goal for the day: 960
Total max. mL per feeding: 120
B = Bottle, N = Nursing, T = Tube Feed, Rate = mL/hour going through tube
Today, 10/15

Yesterday, Friday, 10/14

Thursday, 10/13

Wednesday (discharge date), 10/12

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