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....

Wednesday, April 18, 2012

Cardiologist Appointment

I LOVE going to the cardiologist.  I always look forward to Trey's cardio appointments.  Whether good or bad - I want to know what's going on.  I hate not knowing.  At the appointments I either get reassured that he's doing ok or I get news that something has to be done to fix him.  Thankfully, we've only had 1 bad "appointment" and that was his first ever appointment.  Looking back though, it wasn't really a bad appointment.  The doctor was surprised at how "well" I took in Trey's diagnosis.  The nice thing about the entire ordeal was... ok, so yes, something is wrong and well, this is how we're going to fix it.  Personally I found it so much easier to take in that he had a heart defect than it was to take in that he had Rhinovirus and we just have to ride it out.  It was nice to get a diagnosis that could be fixed.

Trey's cardiologist is awesome.  I don't think I will ever forget meeting Dr. Callahan.  We were at Montgomery General and he came from his Rockville office after hours to come do an echocardiogram on him in the ER.  He was really calm through the whole thing and extremely helpful when Trey became pretty fussy towards the middle of it.  He never seemed to get frustrated with the fact that I just couldn't get him to stop crying and I was definitely getting flustered!  During the echo he talked on the phone with his family, discussing time outs and asking his daughter what mom had said about the issue.  I really liked that he seemed to be a real family guy.  He asked about our family and since then he's called my kids uno, dos and tres.  When he gave me the diagnosis, he gave it to me straight and definitely helped me try and understand what was happening.  I remember him telling me what was going to happen and that when Trey left the hospital he was going to have to take lots of medications for awhile.  I'll never forget just looking at him and saying, "what am I going to do with the dog??  I can't even remember to give the dog her medication!"  That definitely should have been a clue to him that I think a little different than most people!

Needless to say, Dr. Callahan rocks.  The only thing I fear at the cardiologist appointments is that I won't be able to keep Trey from fussing during his echocardiograms.  He's getting older now and a little less patient.  Yesterday he did definitely get fussy and the Wiggles video that was on was just not keeping him entertained.  The next thing I know, Dr. Callahan is dancing (yes, dancing!) in and out of the room to the Wiggles music to entertain Trey.  Trey is my 3rd child - even before this heart thing we've had our share of Dr. appointments and ER visits.  We have never had a doctor dance and parade through the room like Dr. Callahan did... just to keep my child happy!  Seriously, he's awesome.

I do have to give props to his echo tech and exercise physiologist as well.  They also did an awesome job at keeping Trey entertained.  His echos aren't the quickest thing in the world... plus they're not the most comfortable thing either!

Waiting to get set up for his echocardiogram

The beginning of the echo

Waiting for the EKG

All hooked up!

During the EKG

And what you've all been waiting for....

Trey's heart function stayed about the same... even off of the Enalapril and Lasix!  Yay!  Trey is now almost 10 months old (on the 24th) and we are 7 months post surgery.  He is doing SO much better than I could have even dreamed about 7 months ago.  He does have some scar tissue on the back of his heart and his mitral valve is a little leaky but right now those things aren't anything to worry about.  Dr. Callahan did mention that down the road it is possible that his mitral valve could have some issues... but then again, maybe not.  So right now - it's a non issue.  He's doing GREAT!

Dr. Callahan saved my son's life.  There are so many people that have had a hand in saving Trey but Dr. C diagnosed it and has been there with us from the beginning.  The course of treatment Dr. Callahan followed has been ideal.  I couldn't be happier with how things have worked out!!  Thank you Dr. Callahan!!

Wednesday, April 11, 2012

A Long Overdue Update...

Wow, I haven't updated in a month!  Things have been just plain busy.  It's amazing how much crazier things get with just 1 more child in the house.  Before Trey I used to stay up way too late doing digital scrapbooking and getting things done around the house.  Now, I just can't seem to focus on anything.  Before I know it it's 10 o'clock and nothing has gotten done - by that time all I want to do is sit down and watch 1 TV show from the DVR because by 11 pm I want to be upstairs getting ready for bed, doing yet another bottle feeding and getting to sleep.  I have no idea what goes on between 8:30 and 10 o'clock pm.  It's checking emails, writing emails, looking at the calendar and figuring out schedules, working on MOPS stuff or looking at boy scout stuff for Bryce.

There really hasn't been too much going on in the world of Trey during the past month.  His feedings are getting better.  He's up to about 1000 mL's (or 33 ounces) of formula a day which is HUGE for him.  He's eating 3 meals of solids now and he seems to really enjoy them.  We saw the gastro at the end of March and she was a bit worried that he hadn't gained that much weight.  He was still hanging out at around 18 lbs (for a little over a month).  I had decreased the calories in his formula from 27 kcal/ounce back down to normal, 20 kcal/ounce, because he got way constipated for awhile.  She wanted me to go back up in calories but I just had a gut feeling that it wouldn't be good for his system.  He started taking miralax to loosen up his stools but even that really hasn't worked so I've been hesitating upping the calories of the formula again (that can cause constipation as well).  Well - we went to pediatrician on Tuesday for his 9 month checkup and vaccination and wouldn't you know it.... he is 19 1/2 lbs!  He gained 1 1/2 lbs in about 2 weeks.  That's really good.  So, I've decided I'm going to keep the formula concentration as is and not up calories.  By the calculations she gave me... now that he's up to 1000 mL a day and if I can keep all 3 meals at about 70 calories each he gets 876 calories a day.  His caloric need for his weight (19.5 lbs) is estimated to be 868 (according to livestrong.com).  So he's finally doing just fine in the eating department!  He'll still leave an ounce or so at the end of the bottle if it's left up to him to eat but if I hold him and sing "I've been working on the railroad" he'll finish it up just fine.  I have no idea what in the world his fascination is what that song but since coming home from the hospital it's the only thing that has been able to get him to eat... and trust me, I've tried other songs... it's just that one that will get him gulping!

We actually just got back from Fort Myers, Florida on Monday.  The boys and I went down with my mother for spring break.  It was a great week!  The boys had a fantastic time playing in the sand and water.  Trey really seemed to enjoy the water.  The first time I put him down in the gulf it was a bit overwhelming.  I just kept thinking how thankful I was to his cardiologist for seeing his problem.  If it hadn't been seen, we wouldn't have been sitting in the water together.  I thank God daily for putting so many specific people in our life that helped Trey get fixed up and healed.  We really have had such great experiences with not only his cardiologist and surgeon but we were blessed with so many fantastic nurses, therapists, echo-sonagraphers and so many more people we've met along the way that have had a hand in helping us through this.

As for now, it's officially 10:25 pm and I am late in getting downstairs to watch a TV show with my husband.  An adult show is definitely a wind down activity for me.... adult in meaning, Grey's Anatomy... not Yo Gabba Gabba or Power Rangers!  I'll write more about our vacation and Easter another day because I'm just exhausted right now but I'll leave you with a picture of Trey enjoying his first time ever in water other than a bath.