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....

Wednesday, November 2, 2011

Day 8 (home, take 2) - 21 days out of Inova

Wow.  We left Inova 21 days ago.  Unbelievable.  It's hard to believe that we have been taking care of him for 21 days at home.  Things are definitely getting easier but the worry is still there.  It's not constant anymore, which is good, but it's still there.

I've been reading another heart mommy's blog and she is an amazing photographer and writer.  She puts her feelings on "paper" so eloquently.  Her family does inner city mission work in Atlanta and her faith in God is just so evident through her writing and her actions.  Her son has HLHS, which is a congenital heart defect in which the left ventricle of the heart is severely underdeveloped.  Today she wrote a fantastic post called "The Other Shoe."  She writes that now that her son is home it's hard not to worry about everything.  It's hard not to just accept that things may turn out ok... that she's always waiting for the other shoe to drop.  I totally get it.  It's so easy to just worry now.  I worry that every time Trey throws up that it's a sign of something I'm missing.  It's not just reflux or due to his NG tube but due to some odd Gastro issue that we just haven't found yet... a lot like how it went with his heart.  But I need to start trusting in God again that things are going to work out according to his plan.  While I'm not sure of the what's and why's.... there is a plan.  I may not always agree with his plan but God knows best and I need to have faith in that.

Speaking of throwing up though (always a pleasant subject, right?), Trey only had one incident today after his overnight feed and it wasn't all that bad.  It was still a decent amount but it was thicker so it didn't go everywhere.  It also didn't really seem to upset him  Usually after an incident he screams and cries, this morning he just kind of whimpered a little when it came up and looked unhappy for a second and then was ok.  I can deal with that.  So hopefully this is a step in the right direction.  I'm thinking that if he's still doing this in another week that we'll add the Zantac in and maybe he won't do it at all?  They want to go slow though so we can be sure of what's working and what's not.

We had our home nurse come today and she said that next week is her last visit according to the insurance.  I need to call them and remind them of his discharge orders... the hospital recommended 2-3 visits for 8 weeks.  It's only been 3 weeks.  While things are going ok right now it would be nice to have someone to fall back on with questions.  In just 3 weeks I've noticed how things can turn pretty quickly.  Trey is receiving the RSV vaccination but it doesn't fully vaccinate him against it... it just wouldn't be as bad.  It would be good to have someone come to the house and listen to his lungs, check his heart rate and respiratory rates.  Hopefully I'll be able to talk them into approving it.

This morning before our nurse visit Trey and I went to get a blood test.  His Gastro dr. wanted to check his Digoxin levels to see if that was affecting his throwing up.  It had to be 1 hour before he was due to get his next dose, so we went at about 9.  I went into the lab all ready to insist that we skip through the line... the wait at the blood lab in town can be over an hour and I was not going to have him sit in a lab of people that I don't know for an hour and hope that we got in at 9ish to have his blood drawn... they usually aren't the most helpful at the lab.  Today though, they let us right back.  I was shocked!

Trey in the back of the lab waiting to get his blood drawn. I tried my hardest to get his to smile but he knew what was coming!

Today I also changed his feeds.  So overnight he had 480 mL and at 9 he took another 120 mL.  This seemed to go better so I think I'm going to stick with it.  Hopefully tomorrow morning won't be so bad.  Speaking of tomorrow morning... it's midnight now and I'm trying to get to sleep no later than 12:30.  Slowly I'm hoping that we can get that back to 11 pm but being the night owl I am I'm not sure if that will happen.  I enjoy the quiet of the night.  It's very peaceful and I get so much done when people aren't running around the house!

I just realized that I made a mistake on his wean schedule.  I went down on Methadone to once a day today and I also took the Valium down to 0.3 mL.  Oops.  Well, goodness, he tolerated going down on both medications pretty well today.  That's a good sign I think... hopefully the rest of the wean will go ok.  The last day of Methadone is on Friday and the last day of Valium is on Sunday.  Oh, and yes... he gained 3.2 ounces since last week!

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