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....

Thursday, October 20, 2011

Day 8 (home) - 1st Out Patient Visit with the Cardiologist

Today we had our first visit with Dr. Callahan since we left the hospital.  Getting ready to leave was tough because we're on such a schedule with feeds and medicines that it's hard to even leave the house!  His appointment was at 1 so I started his noon feeding a little early but he didn't eat a lot so I had to tube a lot of it which slowed things down.  I also had to make sure I had his medicine for his 2 o'clock dose of Methadone so I got everything I needed for that packed up (syringes, medicine and water to flush the tube).  We finally left the house at about 12:30.  It's about 40 minutes from the house but in true DC fashion... I hit traffic.  Of course on the way there I realized I didn't bring a change of clothes in case he threw up or pooped out of his diaper, nor did I bring any bottles... but gosh, I figured I'd be back sometime around 3 for his next feed!  Oh and yes, I didn't pack my wallet back in my diaper bag!  Wonderful.

Well, I got to the office at about 1:20 (I called to let them know I was running late) and he first got an EKG.  Then he had an echocardiogram and then yet another echo test (some new machine they were testing out... it was more precise than the other machine... I don't know what it was called, I forgot to ask).  3 hours later... his Ejection Fraction is about the same (28%... with the help of medication), they increased the dose of his Enalapril from .8 mL to 1 mL and everything else looked about the same.  He reassured me that it's only been a month and we still have a long ways to go.  This isn't something that is going to just improve overnight.  I left the office at 4:45 and made it home at about 6 pm... an hour and 15 minutes, not bad for rush hour traffic!



I have to head back down to Fairfax tomorrow to pick up the prescriptions because we also needed some more Methadone and Valium to complete the wean.  We are starting the wean back up on Saturday and are going a bit slower with the Methadone than the original wean.  He seemed to do really awful when we weaned .2 mL every other day so we're just going to decrease by .1 mL every other day until completely off.  So I just spent the last 2 hours refiguring out that wean based on the schedule that we were given from the hospital.  I then put it on a calendar, color coded it and stuck it in my binder.  I'm all ready for Saturday!

Lastly, the feeding went ok today again.  Since we spent so long at the cardiologist and I didn't bring any bottles with me (I'm a mom that normally nurses for a reason... my fear was forgetting to bring a bottle and what did I do the first time I go out?... forget the bottle!) so I nursed him and he seemed to do fine.  He did throw up after the 6 o'clock feed but it was a bit longer after he finished than normal and lately he has figured out he can eat his fingers... well, he stuck them a little too far down his throat and gagged himself.  So I don't think it was a true throw up like the other ones were.  I cut 60 mL off of the overnight feed to keep the mL/hour rate down.  He seems to do ok if it's about 50 mL/hr.  I'd rather have lose out on some calories by not giving it to him than having him throw it up in the morning.  It's easier on him. 

Tomorrow Bryce has off of school and the boys are going with my in-laws to a farm north of us.  My mom is coming over tomorrow to help me and we're going to drive on down to Fairfax to pick up the medicine.  Maybe we'll get some lunch at Sweetwater Tavern.  Yum.  First I have to figure out the feeds though.  The feeding pump company, Apria, hasn't gotten me the backpack for the pump yet.  Once I have that he can become more mobile with his feeds.  It's set up so that you can put the pump and feeding bag in it and you move it around.  Right now it's a bit hard to travel with the IV pole.  It doesn't quite fit in the car! ;-)

No comments:

Post a Comment