The Journey of a Sweet Little Boy and His Special Heart

Sunday, December 9, 2012

Appointment Update

I am a month late on this update, but better late than never right?
We had Logan's 6 month check-up with his cardiologist in November.  Not much has changed from his last appointment. 
His sats are holding between 78-82% most of the time. 
He is gaining weight remarkably well (he has almost hit that magic number of 30 lbs- for those of you not in the thick of the heart world it is a huge milestone and goal to get your heart kiddo to 30 lbs before the Fontan surgery). 
Logan was pretty edgy during his appointment.  He remembers pain, and was scared of everything. 
The EKG stickers were traumatic, blood pressure was traumatic.  He was okay with the Dr. listening to his heart, but watched him very close to make sure he wasn't going to pull any shenanigans and hurt him.
The real trauma started with blood work and x-ray (I don't blame him).  After the x-ray they needed him to have an ultra sound to get a better view on a little lump they found on his rib cage (which turned out to be nothing concerning).  But by this time I was not just having to hold him down for a poke, but actually having to lay on the bed with him and hold his whole body down.  It was so scary for him and after being poked he didn't trust us when we told him ultra sounds don't hurt. 
It broke my heart. 
I thought of a blog post a fellow heart mom posted about her last moments with her daughter before she passed away were holding her down for a blood draw.  If I didn't have to do it, I wouldn't.  I cry for him and kiss it better and spoil him rotten afterward praying and hoping I get to keep him a LONG time on this Earth.  And that one day he will understand why. 
So what now? 
This is a question we get all the time. 
We wait.
We asked his doc when he thought Logan would need the Fontan.  His answer was, "Logan has never done anything by the books so I don't even have a guess.  It could be as soon as this summer or he might surprise us and make it until he is five before needing it."
We are hoping to wait as long as possible (within reason).  As long as his oxygen sats can stay above 76% on a consistent basis and he is happy and able to do all he wants to do, we will wait.
I love his cardiologist and I love that I can ask him anything.  I had a list of a million questions and he took an hour with us answering everything and explaining everything in great detail (I am sorry for anyone else who might have had an appointment that day).  I still hang on to the hope that somehow we can save Logan from becoming a complete single ventricle.  I asked all about a Dr. at the Mayo Clinic and procedures he is able to do on the Tricuspid Valve.  He confirmed what I feared, Logan no longer has a functioning Tricuspid Valve at all, so any hope of restoring that is gone.  The only route at the present time is the Fontan.  We are praying stem cell research keeps advancing and who knows what kind of options will be out there in the next 10 years for our boy.
 That is what I can hold on to.

This is the only picture I got of the day.  I think he was asleep before we left the parking lot.
Phew... we don't have to do that again for another 6 months.