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 26, 2011

Day 14 - 3:00 pm - New Central Line

My heart and stomach can only take so much!  I spent some time with Cole this morning so I didn't leave for the hospital until around 12:30 pm today.  On my way into the hospital I received a phone call and I realized it was the hospital.  Tons of things flew through my mind as I prepared to answer the phone.  I was scared to death to hear the news on the other side of the phone.  It was one of the Intensivists from the hospital... Trey's fine, she said, but Dr. Keller wants to talk to you.  Again... he started off with, Trey's fine but... ok, I'm waiting for the other shoe to drop... we'd like to put in another central line.  Trey has had his 1st central line in for about 2 weeks now and apparently the longer you keep it in, the better the chance for infection.  So they wanted to remove the 1st line and put in another line.  Whew... I can handle that!  I gave the approval and by the time I got to the hospital (about 35 minutes later) the procedure was done and his new central line was in.
Location of Original Central Line

Location of new Central Line

They gave him a sedative in order to put the central line in so he's been pretty groggy today since I've been here.  They are keeping the original central line in until they can get all of his medications and nutrition moved over to the new line.  They can't do that until they receive the new nutrition drip tonight from the pharmacy.  They then removed his arterial line that was in his foot and the IV that was in his left arm.  The arterial line was used to monitor his blood pressure constantly but since his pressures have been ok they took it out and are just going to use a cuff to measure it at intervals of the day.  

A few days ago the radiologists found pneumatosis in the bowel, which refers to gas bubbles found in the walls of the bowel in an x-ray, and can be signs of damage to the bowels.  At that time they had begun feeding him through a feeding tube but once the pneumatosis was seen all feeds were stopped.  They then started a series of x-rays over the next few days to see if it would resolve on its own or if it was actual damage that might be getting worse.  Today they concluded that it had resolved and therefore we can start a 7 day waiting resting period until we can resume feeds.  After 7 days they are going to attempt feeds through the feeding tube again and keep a watch on the bowels.  

They just came in to move some of his fluids to the new central line and in order to do this the nurse and Trey had to wear a mask.  It was way too cute not to take a picture!

Things for the family have been going ok. We had a nice weekend together and I think the boys really enjoyed playing with their friends and going to Park Quest.  Friday night I had an awful nightmare that actually woke me up from my sleep.  Looking back on it now it was pretty funny but at the time I was petrified.  I was being chased by a huge brown bear and somehow it car jacked me (um, really??!) and as we slowed down at a stop light (and how would a bear even know to slow down for a red light, let alone drive?!) I jumped out of the car (because well, it takes a while for a bear to get out of a car, they're big ya know) and jumped into someone else's car.  That person drove me to some type of hospital and the bear followed us into the building.  It chased me all around and I hid in different rooms.  I couldn't get rid of this bear and it finally caught up with me in a closet I was hiding in.  It stood on it's hind legs and flanged out its lips, like bears do, and then bam... I woke up in a panic.  I'm pretty sure the entire dream was brought on by what we've been going through these past few weeks.  But really, a bear??! :-)

1 comment:

  1. I'm so glad I was able to see you guys today! Trey looks fantastic! I'll see you guys in a couple days! xoxo