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....

Tuesday, October 4, 2011

Day 22 - 4:30 pm - New Room

Last night, at about 9:30 pm, Trey got moved to a room in the cardiac care unit.  This is the step down unit from the PICU.  The nurses have more than 2 patients and his care is less intensive.  So, that means that Trey is definitely more stable.  The downside - the nurses check on him less often.  Granted, they feel he is strong enough for this, but I don't know if I am!  I was so anxious leaving him last night.  They took him off of oxygen about an hour before he moved but once we got to the new room his respiratory rate skyrocketed.  It hardly dropped below 70 and was often in the mid 80's to 90's. I kept expecting someone to come in but they didn't.  Finally his nurse came in and counted his breathing.  She verified it to be about 70 breaths/minute but they weren't extremely labored so she wasn't too worried.  So I finally left the hospital at 12:45 am after watching him for awhile to make sure he was ok.

Trey in his PICU room, getting ready for his move to the pediatric cardiac unit

Trey's new room and my bag, my lifeline.  I've been living out of my tote bag for the past 3 weeks.  I have everything in there that I need in case I have to spend the night.  I have my netbook, computer and all chargers for them.  I also have some books to read in case of boredom.

The new room is nice.  We have a double room though.  The other baby that is in here is pretty quiet and her parents haven't been here all day so it's quiet.  We're on the side of the room with the window, away from the door, which is nice because we have natural light and we're away from the noise but the nurses can't see him when they're just walking by.  You have to actually go into the room to see him.  We do have one of the new TV's in the room though and we also have a bathroom with a shower.  We also have a chair that turns into a bed and a bench in the room.  The bathroom is definitely a plus though, in the PICU I had to leave the unit and use the public bathroom.  I do, however, miss the nurses and doctors from the PICU.  We spent 3 weeks in the PICU and I really trusted them to care for Trey completely.  I was familiar with most of the nurses and doctors/residents that took care of Trey and they knew Trey.  Now I have to learn all new ones and hopefully we'll only be here for one more week so I won't really have time to.  In this unit the cardiologist is his main dr., instead of the Interventionist, and he will work with the residents, interns and nurses.  There is no attending in the unit at night, only a resident and the nurses.

They upped his feeds today from 2 cc/hour to 5 cc/hour, which is about 4 ounces over 24 hours.  They also moved the tube up into his stomach to see how his stomach handles having milk in it.  He seems to be doing ok with it.  He had one little spit up but it didn't upset him at all.  He didn't fuss and everything else seems to be doing ok (ok poops, no fussing and tummy isn't hard) so they're not too worried about it.

Look mom - no oxygen tube!
The only things left are the feeding tube in his nose, the central line in his neck, the monitoring lines and the pacer wires in his chest.  The pacer wires are pretty standard for cardiac surgeries that use heart lung bypass.  The ends touch the heart so that if he needed electronic support to help his heart beat they would have easy access.

Occupational therapy came to see him this afternoon.  They are working on getting him to strengthen his neck and chest muscles.  They get him to try and grab things and track with his eyes.  They show me how to move him without hurting him and how to position him so that he can progress developmentally without straining himself while he heals.  For 6 weeks after his surgery, he can't be lifted up under his arms.  This puts too much pressure on his chest and can be painful.  You basically have to treat him like a newborn again and scoop him up while supporting his head.  They also rolled him from side to side and they let him have some tummy time with a boppy.

Occupational Therapist and Intern working with Trey 

Trey after Occupational Therapy - he was exhausted!

His medications are all taken orally now and this morning they upped his dose of Enalapril.  They started him on a lower dose a few days ago and are upping him to the dosage that he will come home on.  He will also come home on Digoxin and Lasix.  There is a possibility he might end up taking Carvedilol but right now Dr. Callahan wants to see how he'll do on just the other medications.  Carvedilol may be added later on though.  All of these medications help improve the effectiveness of his heart.  Oooo - Dr. Callahan just came in and asked if he still had his wires (pacer) in.  When I told him yes he said that he can get those out soon.  That would be exciting!  His chest/stomach would look much better!

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