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, October 2, 2011

Day 20 - 2:45 pm - TWENTY, really... twenty days?!

Wow, I can't believe that Trey was diagnosed twenty days ago now.  It boggles my mind.  There are some minutes where I feel like I've been sitting in this PICU forever and can't really even remember what he looked like on ECMO and then there are some minutes where I feel as though his surgery was just yesterday.  There are specific things that are imprinted on my memory.  I clearly remember Dr. Callahan telling me the diagnosis and then asking me if I was alright because I was taking it rather well.  I also clearly remember coming into to Inova and sitting with Dr. Futterman while he went over the procedures he was going to do on Trey that first night... the central line, intubation and possibly the arterial line (which ended up being done the next morning).  I remember wanting to throw up as Dr. Shen explained the surgery to us.  I remember almost passing out when Savannah, the nurse, informed me that he was coming out of surgery on the ECMO machine, I then leaned on a chair that someone was sitting on so that I wouldn't fall over and that person then got out of the chair to give me some room except that the chair had wheels and I tripped as it went rolling (thankfully he sat down pretty quickly when he noticed I was tripping over it wheeling away).  These memories seem like they just happened the other day, yet so long ago as well.  It's quite a weird feeling.

David stayed home with the other kids today so that I could come up and sit with Trey. My parents called and told us that we could take the day off, that they would come up and sit with T but I just can't imagine not seeing him for an entire day  While it's totally possible for someone else to talk to the doctors and nurses and for them to give me the update... I like to be able to talk to them face to face myself.  I feel as though I've seen him through this entire journey and I know what he's getting and what is being weaned that I can only fully understand everything if I talk to the doctors myself.  By hearing it face to face I can keep track of his progress in my head and I don't have a middle man that has to explain things to me. I hope that makes sense. They tend to update other people with how he's been doing in the past few day... me, they update on what's changed since yesterday.

So, right now I'm just sitting here in his room pumping (yes, I was nursing him before this all happened and so far have been trying to keep my supply up by pumping a few times a day but we'll see after all of this if I was able to keep a good enough supply for him to nurse once we get out of here.... can I just let you know though... I hate pumping!!) and watching him sleep.  The nurse fashioned a little seat for him out of blankets because she noticed he really started smiling when he was sat up.  I think he likes looking at the world from a different viewpoint!

His oral Valium was weaned down today by 10% and his oral Methadone will go down by 10% tomorrow.  He is off of his Milrinone drip now and is only taking his Lasix (which reduces swelling), antibiotics and nutrition (they are going to start feeds again tomorrow) through his central line right now.  He is orally taking Digoxin (this helps the heart beat better), Enalapril (this opens up the vessels in the body so that the heart can pump the blood through the body more efficiently and easily - this is the new medication he started yesterday), Methodone and Valium.

His nurse today is Jane and I just realized his objectives for today are listed up on his dry erase board.  They are:  1. Stop Milrinone  2. Stop antibiotics  3. Start feeds tomorrow

Well, Trey's Grandma and Grandpa just got here so we are going to visit with them.  So far today looks like it's going to be pretty smooth.  I'll post another update tomorrow, unless something changes today.  Thanks again for all of your prayers!

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