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....

Monday, September 19, 2011

Day 7 - 5:27 pm

Trey has been off ECMO for 7 hours, 25 minutes now and is holding his own.  His vitals haven't really changed much since he has been taken off the pump.  He had an echocardiogram this afternoon and it showed a very, very slight improvement.  The muscle looked as though it had a stronger squeeze towards the ends of the heart (according to the cardiologist... not me!) than when he came in a week ago.  His ejection fraction looks a teeny bit better than before surgery as well.  They won't pinpoint what that number is because it can vary a lot... basically, the surgeon just explained to me that I just need to know that it is going up and not to get stuck on numbers for that as of now.

The other number that they are really looking at is the pressure in the left atrium of the heart.  Right after surgery the pressure was in the 30's.  This is high.  Since the heart is weak it is not pumping the blood out, yet blood keeps coming in.  Trey's left atrium is weak and they need to make sure there isn't a backup of blood in that cavity. If blood keeps coming in and the heart can't get what was in there already, it could start backing up into the lungs... which would be bad.  One of the reasons he was put on ECMO is because this LA (left atrium) pressure was high.  Right now it is hanging around 21 and they seem happy with that.

This morning at 7 am I received a call on my cell phone.  I was absolutely exhausted, looked at the number and almost didn't answer it because I didn't recognize it.  Thankfully I realized that the area code was from Virginia and automatically thought - oh crud! (ok, so maybe it was more "french" than that)  It was Dr. Shen, the surgeon, and he told me that he had begun to bleed more and it concerned them.  He wanted my permission to go in to his check to take a look around.  Um... yeah... please do!

When I got here at a bit before 10 I walked into the PICU and there was an entire cardiac team in his room (see picture below).  They were in the process of taking a looksie at the bleeding, unhooking the ECMO cannulas and attempting to close his heart.  By the time they were finished he was off ECMO but his chest was still open.  This is what happened....

Dr. Shen explained that when they suture the artery onto the aorta they use a needle and thread.  The needle is thicker than the thread so after the stitches are in there is some oozing around the stitch from the width of the needle.  The hope is that the blood will clot and seal this off.  Since he was put on ECMO they had to give him Heparin, a blood thinner, so that the blood didn't clot in the machine (human blood does not like plastic and therefore will thicken/clot int he plastic tubing of the ECMO).  Unfortunately, the Heparin didn't allow the blood to clot around the sutures and therefore he started to bleed from the surgery site.  Once they took him off the ECMO pump they were able to give him thickeners, which was able to get his bleeding under control because he could clot.

They attempted to close him as well, but whenever they pulled the breastplate together his heart rate would jump to the 190's which was too high.  When they released the breastplate the heart rate would drop down to the 170's.  They decided to keep the chest open for now because of this and are going to attempt to close again on Wednesday or Thursday.

The Dr.'s and Nurses here at INOVA are absolutely awesome.  Dr. Shen has explained everything in depth whenever I had a question in language that I can understand easily.  They are all so incredibly easy to talk to and ask questions.  Dr. Shen is going on vacation tonight so his colleague, Dr. Collazo, will be here this week.  I asked Dr. Shen if he thought we'd still be here by the time he returns on the 30th.  Dr. Shen and Dr. Callahan (cardiologist) discussed it and it was determined that we most likely will. Dr. Callahan said that it's definitely a possibility that we could still be here for an additional month.  I then asked them if it was possible if I could come live with them for a short while after we were discharged.  They laughed.  I'm just so nervous about going home.  Of course, it's still a long way off so that's why I can't imagine it.  I assume that as he eventually comes off of the different machines, IV's and wires that going home will seem easier but I can't even imagine sleeping during the night for a long time after he comes home!

The picture below is from when Trey had his echo.  The Dr. with the cap on is Dr. Irving Shen (surgeon), next to him is Dr. Patrick Callahan (pediatric cardiologist), the Dr. on the phone is Dr. Michael Vish (PICU attending this week), sitting down is Dr. Kathleen Donnelly (PICU attending on call for cardiac) and Hannah (our nurse) is on the left of the photo.

1 comment:

  1. Off ECMO! YAY! He's a real fighter. You know, you have bravely earned the title of "Heart Mom" over the last few days. Throwing out terms like ejection fraction and LA pressure...you are quickly becoming an expert in the world of pediatric hearts and CHD's. I had always hoped that I'd never have to watch anyone I know go through what we've been through, but you are one amazing mom. Trey, Cole, and Bryce are lucky to have you. I am praying that things continue to stay stable off pump.