Tuesday, August 26, 2014

Pediatric Cardiology

Long time no post!  Again this is a testament to how boring life is now with Carlos and his health status :)  I'm not complaining! 

Carlos started back to school this week and is moving forward with completing his degree, which was interrupted by a downward spiral in his health back in 2011.  Only he's changing tracks.  I encouraged him to do something he is passionate about.  He can't waste this gift of a second chance at life.  So he's moving forward with becoming a coach, reffing for volleyball, and becoming a PE instructor.  I am so excited for him!

At a pediatrician appointment last month with Libby, the doctor recommended that the kids be evaluated by a pediatric cardiologist.  They are at risk due to a significant family history and concern that this could be hereditary.   Carlos' mother died after childbirth, when he was 2 weeks old.  She was 19.  Her father also died from heart failure in his 50's.  Given that the girls are athletes (I'm sure you have heard about athletes dropping dead on the court from undiagnosed heart conditions that no one would have expected) and may also have babies someday, he felt it was especially important to have them screened.

Both Libby and Daja were seen today.  Chris will go next month for his evaluation.  The girls had EKGs done and echocardiograms (ultrasound of their hearts).  I honestly expected everything to be normal and felt like this was a touch of overkill.  Low and behold, they found something.  Daja has a small ASD.  It's small enough to not be of any concern.  Libby has one also, somewhat larger.  She also has some mild thickening in her ventricular wall, but not a cardiomyopathy.  Both girls will have it re-evaluated in one year.  

I had a moment during Libby's echo.  All I could think was 'Omg, I have to do this again'.  But how did I get two kids with a congenital heart defect, mild as it is?  The cardiologist wants to see if they will close over time, because there's a thin membrane in both of the ASDs.  Libby definitely had more shunting of blood then Daja's defect did.  I wonder if Chris will have this too.  Even though it's all mild and not causing any problems, it's a little scary for me, the thought that their hearts aren't perfect.

I'll post more once Chris is checked out.

Monday, May 19, 2014

One Year Anniversary for Transplant

It's been a long time since I've posted....since June of 2013 I believe.  What's happened in that time?  Not much, which is a good thing.  Carlos has done remarkably well aside feom some weight gain issues.  He's been the picture of health since receiving his gift of life.  He's even weathered a cold and a stomach virus without any difficulty!

This week he has a full evaluation.  Today he had a ton of blood drawn....10 tubes.  And now he is waiting for his left heart cath.  I guess the plan is to evaluate his heart function, pulmonary function, etc.   He normally only has a right heart cath, which they do for biopsies to evaluate for rejection.  Tomorrow he has a bunch of other less invasive tests then follow up with the docs and nurses on Wednesday.  We anticipate a clean bill of health.

I remember when I used to get so nervous about the heart caths, I would ask a friend or family member to sit with me.  Seems so ho-hum now.  I told Carlos it's hard being the family member.  When he would have surgeries, he would get to sleep or get really good drugs.  They should consider drugging the family members too...at least provide an ativan lollipop or three!

I just got done giving him a hug before he goes back and gets the good drugs.  It's very cool that one of his nurses is the mother of one of my patients.  There's a little extra comfort in that :)

So now that it has been a year, I'm contemplating writing a letter to his donor family.  I would ask the kids if they want to write as well.  It's a very emotional thing and I worry that it will be difficult to adequately express my gratitude in a written format.  But I think it's worth trying.