Monday, April 3, 2006


Nova had another CT scan today to assess how much the blood thinners had reduced the size of the blood clot in his superior vena cava (SVC). The blood thinners have made no difference at all, and the SVC is nearly completely blocked. This means that there is very little room in the vein for the blood to flow through from his head and arms back to his heart.

Tomorrow he goes in for an Angiojet cath to try to clear the SVC. This is sort of like sand blasting away the blood clot and sucking out all the bits. If it works with no complications, it will be a wonderful thing. There is a chance that the clot will come loose and travel to his lung, which would kill him. And there is the chance that the clot is too hardened for the procedure to work, which leaves us with the only remaining option, which is to go back to surgery, and basically we'd start all over again where we were 6 weeks ago.

And here we are again, the thing that saves him might kill him, and there is no choice but to do it. I don't know how much more he can take. I don't know how much more any of us can take.

He goes in for the procedure at around 11 in the morning. I have no idea how long it will take. I'm praying that it is successful, uncomplicated, and that he tolerates it as well as last weeks balloon cath.

They also saw, via the CT scan, that the veins in his groin, on both sides (femoral veins) are completely blocked. There is nothing they can do to correct that. They tell me that the blood finds other smaller veins to travel back to the heart and that those veins being blocked isn't as serious as it would seem. The major problem with these veins being blocked is that they can no longer be used for future heart catheterizations, and we know he'll need future caths. They'll have to resort to using the vein in his neck (external jugular - the one they used last week) to do tomorrow's cath, and future caths. Unfortunately, the more you use a vein, the more likely it is that the vein will deteriorate and become unusable/blocked. Eventually, they may have to use the vein from his liver.

I love the nurses in CVRU, the doctors are wonderful. I love Dr. Watts, and Dr Stern is amazing too. I have been blessed with every one of them, and am grateful to Joan and Michelle (Patient Reps) for how helpful and sweet they have been to us.

I'm sick of them all, I'm sick of this ride. I'm sick of bad news and hearing the words "devastating" and "catastrophic" and "death" used in reference to my son.

This is tonight.
I saw a hat on another heart baby's site that said "I'm a Miracle" that came with a matching onesie. It was adorable, and I fell in love but I can't afford $26 for the set, so I hit eBay and had one made for him. $4. There's no matching onesie, but he can't wear any clothes right now anyway. Her name is Colleen, and she's wonderful. As soon as she read his story, she rushed the order, and included an extra hat for free that has his name embroidered on it. If you need personalized baby hats, she's the one you should talk to. We didn't get pictures of the "Nova" hat, but it's seriously cute - the hat has multicolored stars all over it, and his name on the folded part. Unfortunately, getting this one on him and taking the picture pretty well ticked him off, so we'll get pics of him in the other tomorrow morning.


  1. Aww, hon. I know you hurt right now. You know how to get a hold of me if you need to. I still believe he's a fighter. I'll be sending you extra prayers and my grandma's watching over him (my guardian angel). *hug* Love you.

  2. Oh Erin,

    I have tears running down my cheek as I type this. All I can say is I am praying and so are many of his well wishers.

  3. Oh E! What news to get following the false yeast reports! Prayers said, energy raised, candles lit for the little miracle. I'll be waiting to hear the results. I have faith, as I always have, that it's all going to work out well.

    I know that you have wonderful nurses and doctors, and they are a blessing, but I can certainly understand how you are sick of them and all they represent.

    Keep us informed as much as you can. We love you, E.

  4. kansas grandma10:00 AM

    I read and look for updates on your blog - a lot. And when I read this latest, I thought, "geez, this little guy simply cannot catch a break". Unless, of course, you count the major break that he got having you as his Mama, and Scott as his Daddy. I, like so many, would like to do something. I, like so many, was raised to feed people in time of crisis. But sending a jell-o salad from Kansas doesn't seem all that helpful. So, I will continue to send the very strongest of positive thoughts. Of course, these are for Nova, but most especially, they are for you, that you continue to dig deep for that strength, that you probably think is used up clear down to your toes, to know that more strength will be there when you need it. So I hope you have some time today to sit quietly and be filled with the caring that family, friends and strangers send to you so often at all hours of the day and night.