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 25, 2011

Day 13 - 12 pm - Chest Tubes Out

Yesterday Trey was extubated successfully!  Hubby, me and the 2 other kiddos went to Park Quest (didn't win a grand prize... bummer) and had a good time.  I was nervous the entire time about not being there for extubation but it was nice to be out with the other boys.  Park Quest was extremely muddy and we were an absolute mess by the end of it but the boys had a great time pretending to fish, pretending to put out fires, letterboxing and playing disc golf.  They also learned all about the "leave no trace" policy of the parks, about horseshoe crabs and about the different insects in Maryland. 

All the grandparents and Aunt Kari went up to visit Trey yesterday so he was definitely not alone.  My parents called to let me know when he was extubated and then they sat with him through a lot of his withdrawal symptoms.

Trey had been on a lot of medication to sedate him so that he wouldn't pull on the ventilator or mess with his open chest.  It's not like they could just tell him not to touch those things and he just... well, wouldn't.  Therefore, he was well sedated.  Plus, he woke up a lot some days and seemed to be in pain so they gave him even more sedation.  Unfortunately, he now has to be weaned off of those medications and he is now going through withdrawal.  They can give him other medications to help him come down, such as methadone, but it's still not going to be a fun time for him.

We did end up driving down to the hospital after Park Quest was over because I was so anxious about not being there.  By the time we got down there he was crying and just not happy.  His cry is really pathetic because of the vent and it's a silent, raspy cry right now... which is really sad sounding!

Trey without his ventilator in - finally, you can see his top lip!!
(it had been all taped up to keep the vent from moving around)

We sat with him for about an hour and a half and then we went to dinner with my parents.  Afterwards, we went home to get the other 2 kids in bed but my parents went back up to the hospital to say goodbye to Trey.  They told me that when they got back up there he was still crying a bit but quickly got a dose of Valium, which helped calm him down a lot and he was able to get some sleep.

Now... onto today so far.  My best friend, Kelly, whom I haven't seen in about 3.5 years is coming to visit today.  Her husband is military and since they left here they've been in Japan, Chicago and now San Diego.  Since she has left we've both gotten pregnant (me twice, her once) and had kids.  We've always either been pregnant or postpartum and flying to visit would have really been difficult.  Well, her brother in law got married yesterday in Virginia so they had to fly back here.  Yay for me!  They're stopping her on their way back to California for a few hours to visit and I am SO excited.  Over the past few years we have spoken to each other pretty much every day and we've endured way more than friends should have had to endure together.  We've definitely been a huge support for each other.  I can't wait to meet her new little kiddo and for her to meet my 2 new ones (I'm taking her to the hospital for a little bit today too).  My oldest was best friends with her oldest (3 weeks apart) for a lot of their childhood and he's excited to see her oldest as well.

On to Trey, I just called up to the hospital and he's been moved into a private room.  Holly, his nurse, let me know that he seems a bit happier and content today.  He had his chest tubes removed (yay.. no more tubes coming out of his body!) this morning.

I can't believe things are going so smoothly.  I keep waiting for him to take his "two steps back."  I keep preparing for things to go wrong.  When they took the ECMO out I really was expecting for him to have to go back on for a bit.  Nope, that wean went smoothly.  When they took the vent out I was expecting for it to have to go back in for a bit longer.  Nope, so far so good.  I keep expecting his echocardiograms to show something alarming but nope.. they are showing "smidges" of improvement.  That's the word that Dr. Callahan uses, smidges.  I'm sure he uses that to inform us that yes, he's improving, but it's very small and the recovery of his heart is going to be a slow process of the next year or so.  But I'm happy with "smidges"!  That's a step in the right direction.

Anyhow, I'll be up to see him a little bit later in the day and I'll write an update tonight of how he is doing.  I'm sure he'll photograph a lot nicer now that he has his drains out too! ;-)

(Gosh, I hate drains... they're so creepy looking to me!)

1 comment:

  1. That furrowed brow haunted me all night. I have been sending Trey positive thoughts and comforting energy. I hope his pain is greatly diminished today!