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 8, 2011

Day 26 - 8:30 pm - A night of PVC's and a big boy bottle!!

Trey had PVC's on and off all day yesterday.  After I posted the update yesterday the PVC's he started having them a lot more often.  I tried waking him up to feed him and I couldn't get him to wake up.  He had been sleeping all day and I couldn't believe that he was still so tired that he wouldn't wake.  I went and got some ice to put on his feet to try and wake him but I couldn't get him to stir.  I pinched him and turned on the alarm from my Iphone but he wouldn't wake.  I started getting worried and soon he was having trigemine's, which are PVC's every third heartbeat.  The resident tested his blood to see if anything was lacking, sometimes low electrolytes can cause PVC's.  The tests came back fine.  She ordered a chest x-ray and EKG to compare to his last ones to see if anything had changed.  Nothing looked different.  She went and got the PICU doctor to come see him and they figured that it was probably part of his morphine/methadone wean.  They thought that maybe this was his body telling them to wean faster so they decided to skip the next doses of the medication.

Since his PVC's got worse through the evening I felt uneasy about leaving early so I stayed.  Then when I couldn't wake him up I didn't want to leave him so at 1 am I decided I was too tired to even go home if I could get him up so I decided to stay overnight in the hospital.  I ended up falling asleep around 4:30 am.  I set my alarm so that I could wake up for rounds in the morning. I remember it going off and I silenced it as I thought I was waiting to hear for the dr's to come by.  My parents called to see how Trey was doing and I realized it was 9:15!  I looked over at trey and he was wide awake and alert just looking at the room!  I thought I missed rounds but thankfully I ran right into the doctors when I walked out of the room.  Dr. Rudra (the cardiologist on call at the hospital this week), Dr. Shen (the surgeon) and Chuck (cardiologist P.A.) came by to check on him. They too figured that him being so drowsy yesterday was because he needed to be weaned off the medication at a faster rate.  They're not sure why he had the PVC's but they weren't too overly worried about them, but they ordered an echocardiogram so that they can make sure that there was no damage to the heart.  The echocrdiogram showed that his heart function was about the same as the other day, which is good.

Nana and Granddaddy also came to visit today.  Poor kiddo is getting a funny shaped head from laying down so much this past month.  What a big baby though!  He's a little over 15 lbs at 3 months!  Goodness, I think Bryce was 16 lbs at a year!

Today Trey got a "big boy bottle."  They are allowing him to take all he wants orally and then anything he doesn't finish gets fed to him through his feeding tube.  He has to prove he can take all 4 oz before he can get the tube out.  Today he took about 3 oz by mouth for most feedings except for the 9:45 pm feeding.   We fed him before we left tonight and he was pretty sleepy then, plus was throwing a lot more PVC's again, so he didn't seem too interested in eating. 

Trey and his "big boy bottle" (as Melissa, his nurse today, called it)

We left late again... at about 10:30 pm... and of course, ran into 30 minutes of traffic on 495 (at 10:30 at night?!).  They're doing construction and all lanes were merged into 1.  Seriously, the DC beltway is a nightmare.  Well, it's about midnight now and I got very little sleep last night and whatever I did get, was not good.  I had a headache for most of the day and was pretty tired.  Right now I feel as though I could fall asleep while typinzzzzzzzzzzzzzzzzzz........

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