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, October 13, 2011

1st full day home - 9:00 pm

So this is our official 1st full day home.  I can stop counting days now in the title of my posts.  I am not sure if that's a good thing or not though.  We left the hospital last night at about 7:30 pm.  It was a really long day.  When I realized they were totally serious about sending us home on Tuesday night after putting in the feeding tube I rushed home to get "ready."  First up... cleaning the bathrooms.  They were a disaster.  Hadn't been touched in weeks.  Yes I know... disgusting... but one, I hate cleaning and two, cleaning the bathrooms were the last thing on my mind.  I'm meticulous about cleaning too so it takes me awhile... the perfectionism usually hurts me in the end because if I don't have the time to really do it... I don't do it because I can't do it like I want to.  That hinders me a lot sometimes.  Next up, making a spreadsheet to keep track of Trey's medicines and feeding times.  Those who know me well know that I have a spreadsheet to keep track of everything!  Then I wanted to get everything to who I wanted to get things to.  I had a devotional that I wanted to give to Zach's mom that I really enjoyed that my mother in law gave me in the beginning of this ordeal.  I had an ALCAPA article I wanted to get to the surgeon and I had promised the cardiac nurse that I'd get her some of the pictures I took during our stay so I burned those onto a CD.  Yes, I totally know I could have sent this stuff in but my mind works in weird ways.  When I remember something - it needs to get done.  Otherwise, it doesn't happen.  I stayed up until about 2 am doing all of this.  Then the next morning, before we went to the hospital, we cleaned up all of the stuff that had accumulated in our bedroom over the last month and organize/put away all of the laundry that was in piles.  I needed to feel somewhat "normal" before we brought Trey home.  Once he was home I knew that I wasn't going to want to do all of this crap and I figured they couldn't discharge him if we weren't there yet!

The Schedule Spreadsheet

We got to the hospital at about 1 pm and then started the madness.  At 1:30 the lady from the medical rental place came by to teach us how to use the feeding pump and IV pole we were going to take home.  The cardiologist came by and talked to us about what comes next and the appointments we needed to make.  A nurse came by to quiz us on the CPR video we had to watch before we brought him home.  We had to get prescriptions filled and pick them up downstairs.  Then our nurse needed to check to make sure they were correct, go over the correct doses for each of them with us and tell us the times they were giving them to him.  We went over his feeding schedule and his Methadone/Valium wean schedule to make sure we understood it all.  They went over things to expect during the wean and things to bring him to the hospital for.  He also got his RSV vaccination (he gets one every month during RSV season now since he's high risk) and they upped his Enalapril so they wanted to watch him for a bit for any reactions.  Then of course I went to say goodbye to the PICU nurses and to thank them for everything they had done for Trey and for all of the support they gave to me.  After Trey got unhooked from all of the monitors and we dressed him, we took him back to the PICU so that the nurses could see him before we left.  It's amazing - they all really made us feel part of the team that helped to fix Trey.  They did so much to help him that I feel that they're "family" now.  

 Loren, his tech, getting his last blood pressure in the hospital while he was getting a feed from the hospital pump

Getting ready to leave!

In his own clothes!

We ended up leaving the hospital at about 7:30 and getting home at about 8:30.  Cole was already asleep but Bryce was awake and thrilled to see Trey!  It makes me so happy to see how much he loves his brothers.  Trey got a kiss goodnight... but I didn't!  We unpacked and set up all of his feeding stuff, gave him his medicine and started his night feed.  We set the pump at a rate of 79 mL/hour and a dose of 625 mL (or 11 oz) of formula.  I gave him his last medication at 1 am and went to sleep.  It was an exhausting day!

Getting his overnight feed in his bassinet at home

At 5:30 this morning I heard David jump out of bed.  Then I heard gurgling sounds from the bassinet.  I was in a daze.  I was so tired I wasn't sure what to do and what was going on.  It finally dawned on me that Trey was in trouble and I jumped out of bed.  I had been caught in some dreamworld and I wasn't sure what was happening.  Trey was vomiting all over himself.  I stopped the feeding pump and we got him onto our bed.  He vomited again all over the bed.  It was a lot.  I was a wreck.  On top of that, I had a stomach cramp that wasn't really allowing me to stand up straight.  David was awesome.  He got Trey situated while I hobbled around trying to get what we needed to stop the feed and detach him from the pump.  Next thing we know, Bryce is wandering into the room and Cole is screaming from his crib.  Yes, it was quite the ordeal.  We got Trey situated and he stayed upstairs with me while David took the other boys downstairs.  T and I napped and David got the boys dressed for the day.  Bryce went to school and Cole went to Nana's.  Thankfully David decided to stay home for the rest of the day because I was really nervous.
I felt totally drugged for most of the day today.  I napped off and on today until about 1 pm.  I even fell asleep while watching TV - I never ever fall asleep watching TV.  Let alone the runway part of Project Runway!  That's when the exciting stuff happens!  I'm feeling quite defeated today.  Trey is not really eating much at his feedings at all.  I called the cardiac nurse practitioner, Meghan, at Inova and told her what happened.  She figured that he probably got too much last night at one time and that we should feed him by tube a little more today, especially if since he wasn't eating.  Today he averaged about 20 mL for most feeds, out of 120 mL, so that is like nothing.  So today he has gotten 3 total feeds of 120 (bottle offered first, whatever he didn't take went in by tube) mL.  


I'm also having trouble fitting the whole pumping for milk thing in.  I'm also not producing everything that he needs.  I've never been a very good pumper to begin with though.  If they nursed I could feed my kids, couldn't if I had just solely pumped.  The problem is that Trey now is refusing formula by mouth.  If it is offered in a bottle... he won't eat it at all.  So, we are giving him what I can pump by mouth and whatever he needs by tube is formula.  Next problem is that my electric pump broke a few days after he went into the hospital (seriously??!) and I have been using the manual hand pump.  After awhile today my hand started to hurt so I broke down and ordered a new pump from Amazon tonight.  I was going to rent but the rental fee is about $80/month while a new pump is $140.  Who knows how long I might need it for so I figured I'd just suck it up and get a new one.  That will be delivered on Saturday.

We had the home nurse come today as well.  She is going to be coming 2-3 times a week for 8 weeks.  At first I thought... what are we going to need her for??  But after what happened this morning, I'm glad!  In the ordeal this morning, Trey spit his feeding tube out (not all the way but enough that I had to finagle it back in).  After I put it back in I checked with the stethoscope to make sure it was placed correctly but it was nice to have her to re-check it to make sure I was right.  I was, it's in the right place thank goodness.  

So that's where we are right now.  Tonight we had chicken enchiladas that were brought over by a friend and someone else dropped off a gift certificate to California Tortilla.  We have gotten so much support, meals and gift cards from so many people and we are SO thankful.  The response from people is overwhelming.  It often makes me tear up because I am just so touched by all of your help.  

Lastly (I have to go do T's 9 o'clock feeding and I'm getting behind here)... I do read every comments on facebook, every emails and cards.  I'm sorry if I can't get back to everyone right now... but I am reading everything and it means so much to me to get little words of encouragement.  Today was a day that I definitely feel discouraged and all of your kind words have really helped me out.  Thank you!  

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