Sad Day at the Cardiologist

Well, I guess we were bound to get here, one way or the other.  Just was hoping to hold off longer.  Our Cardiologist wants to do a heart cath in the next few weeks. 

We (Sam and I) went for Sam's regular 3 month Cardio visit today.  Chris is out of town and I was able to drop Luke at daycare before the visit.  Sam was SO good.  I can't even emphasize that enough.  He had a few moments of high anxiety, but by the time his Echo rolled around, he was laid up on the Echo table, lights off, Toy Story on the TV, sucker in one hand, and other hand relaxed behind his head like he was on the beach.  He weights 36lbs and is 41.5 inches tall....whoa!  Where did my baby go!

Before the Echo, I talked to our Cardio about Sam's increasing shortness of breath.  He really can't play too long before he gets winded.  This wouldn't be a huge deal (I mean, this is what is expected for his condition), except that recently he will vomit when he gets winded.  Now, if you know Sam, you know he vomits A L L THE T I M E.  He's a gagger...it's just what he does.  But the vomiting just when winded is a fairly new development.  Cardio is going to send a referral to GI, just to check it all out.  He doesn't THINK it's heart related, which is good.  But, I could already tell his gears were starting to turn when we were talking, and he told me he wanted to see the Echo results before he said anything else.

After the Echo, he said he saw a narrowing in the left branch of the pulmonary artery (the vessel that carries blood from the heart to the lung).  It's not necessarily related to Sam's list of pre-existing defects, but it's there now when it wasn't there before.  He thinks this narrowing is causing decreased blood flow to the left lung, and increased blood flow to the right.  He thinks the lop-sidedness might be causing the out of breath moments.  He thinks we need to go in asap via a cath and open up the narrowing (ballooning and maybe stint).  While we are there, he is going to have them 'coil off' (close up) the colatteral vessels that are forming.  More of those have formed since last time too, which might contribute to shortness of breath.  He hopes that by doing these things, we can hold off the Fontan (Sam's next open heart surgery) a bit more.  Unfortunately, it doesn't sound like we are going to make it to the age of 10 like our last guesstimate stated.  I didn't think we would make it that far anyway, but hoped we would making a little further than this.  He said depending on what the heart cath finds, we may be in for the Fontan surgery as early as next Summer.  We'll just have to see what they find and how much the coiling and ballooning help.

He also started Sam back on Lisinopril (blood pressure med), as it is becoming protocol for Sibley Heart Center to put post-Glenn (Sam's first surgery)  kids on Asprin and Lisinopril to help heart function.  He said that after the Fontan, they will add a third medication that will help heart function and decrease scar formation.  He said all 3 will be life long.  I hate that.  But whatever it takes, right?

Sam was just officially signed up for a program at CHOA-Sibley called Beads of Courage.  It is a part of their child-life department, and helps kids take ownership of their medical condition by 'rewarding' medical experiences with a hand-made bead, and then encouraging the family to help the child journal their experience.  This is a new program at CHOA.  But they are going to 'back-pay' Sam all the Beads he has earned since birth...over 100 when we did the tally!  My job will be to string them and start a journal for him for each bead on the string from birth to the present.  I hope that from the present and into the future, he will be able to help me collect, strand, and journal each bead he earns.  He may not be quite old enough, but maybe this upcoming cath will be a great chance for him to not just add to his bead strand, but start to understand exactly how much he has been through and how special he is.  When we have the beads, which are currently in the mail, I'll be sure to get a photo of him and his strand!

It may have been a blow, but we are prepared.  I'm anxious to see if the cath helps Sam's tolerance for physical activity, and to get a real estimate of how long until the Fontan surgery.  It will be a rough few months for Sam, unfortunately!  He has to go back for another set of tubes in his ears, thanks to chronic fluid that just refuses to stay away!  Two procedures that need full anesthetic in just a few weeks time...I hate it for Sam and I hate it for Chris and I!!! 

On a whole different note, little Luke is growing like a weed!  He was 15 lbs at last check, and at 3 months old, he is filling out 6-9 month outfits!  He has the BEST disposition, and hardly cries.  He eats like every meal is his last, and sleeps like a champ.  He is starting to giggle, and loves to talk.  If he keeps being this good, he might earn himself a sister some day!  Poor little Luke will be having his own journey up to Atlanta for a specialist appointment in the next month or so, as it is time to address his hypospadias.  I'm thinking it might be worth mine and Chris's time to just buy a house next to Egleston hospital and move to Atlanta!  I would LOVE to snag a pediatric therapy job there! 

Tomorrow I will be driving Sam and Luke (and Relo) to Montgomery to pick up Chris from his business trip.  We will then be headed to Mobile for Luke's baptism.  I don't think the fun ever ends in our house!

~Kathy