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....

Sunday, September 18, 2011

Pre-Blog updates from Facebook - Days 1-6

9/12/11 (Day 1)
12:56 pm  Trey had some breathing issues again this morning so we are back in the ER.  Been here about an hour and a half and he is doing much better now.  Just waiting to see what comes next now - at Montgomery General Hospital.

10:03 pm  In the Cardiac PICU with Trey at INOVA Hospital

9/13/11 (Day 2)
3:38 pm  Watching Ellen and having a snack of blueberry yogurt covered pretzels while waiting for Trey to get our of the Cath Lab.

12:00 am  ALCAPA diagnosis is confirmed.  Trey will be having open heart surgery at 7 am at INOVA in Fairfax, Va.  The surgery should last about 5 hours.  Please keep him in your prayers.

 9/14/11 (Day 3)
1:57 pm  Trey is out of surgery.  Waiting to get report from Dr. Shen.  Will be slow in transporting him back to PICU though due to lots of machines attached to him.  Might be awhile get get report still.

7:43 pm  Trey is currently on an ECMO machine that is assisting his heart in pumping his blood through his body.  The Dr. said that his heart was working a bit less than they thought.  It was pumping about a 7% output or ejection fraction, which is not good at all.  If they hadn't caught it this week he may not have survived much longer so praise God for Dr. Gebru at Montgomery General Hospital and Dr. Patrick Callahan, the cardiologist that diagnosed him. 

1:32 am  Spent 2 hours with Trey.  Had some good laughs with the nurses.  Just what I needed.  Apparently he is doing really, really well on the heart pump and is trying to fight sedation.  They said the fighters usually recover faster.  Not out of the woods yet but the trees are getting greener.

Off to sleep in the waiting room after a very trying day.  I hope the couch is comfortable!  I'm staying tonight but will probably start going home for nights starting tomorrow. 

9/15/11 (Day 4)
Trey survived the night.  We spoke to the Dr. and she said he's still very, very sick and that they had to sub in some other medications for ones that he wasn't tolerating well but he didn't give them any surprises while we slept.  He is still on the ECMO machine, which is taking the blood out of his body, putting oxygen in it and then pumping it back into his body and around it.  This is giving his heart a mini vacation to recover from the surgery and the damage he had.  Right now he has 1 PICU nurse dedicated to just him and a profusionist dedicated to just his pump.

The Dr. Stated that his heart has a lot of damage and some cells have already died.  The hope is that the cells that were borderline surviving will rejuvenate and become strong again.  They're not sure how much of his heart was just weak as opposed to already failed.

9/16/11 (Day 5)
Today was a slow day for me and I didn't get to the hospital until 11:30 am.  I then spent most of the day journaling our journey so far.

Trey remained stable last night.  Today they clamped the ECMO to see how his heart was pumping on its own and he pumped out an output of 11% instead of the original 7%.  Normal numbers are between 50 to 70 percent.  While it's a step in the right direction they would like to see more and therefore decided to give his heart another day of rest before attempting the wean.  So not much of a difference today.

9/17/11 (Day 6)
Went to Bryce's soccer game this morning and then headed to the hospital to see Trey.  

Trey is exactly the same today.  They decided not to try any kind of wean from ECMO today because after the test yesterday his output was an improvement but they thought his heart would benefit from resting over the weekend and the output would be much better on Monday.  So it's more resting on the ECMO pump until Monday.

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