Tuesday, March 28, 2006

tonight and tomorrow

Nova looks so much better today. The swelling went down SO much in the last 24 hours. He's off the Dopamine (did I already tell you guys that? I don't remember) No paralytics, still on Versed and Morphine, but he opened his eyes and looked at us tonight, and was moving around - and he's WARM! He has been soooo cold lately. Shanda let me take his temp (rectally lol) and let Scott put the Silvadene on his bed sores. (We had to wear rubber gloves, and yes, of course there were the expected jokes.) I really loved being able to do even something that small - I do miss being his Mommy. It's a proven scientific/psychological fact that during extended hospital stays, parents start to wonder if they'll be able to take care of their children when they come home - that they get this thought that, "Hey, it takes teams of people to provide what he needs, how am I ever going to be able to do it on my own!?" I read about that weeks ago, and swore I wouldn't allow it to happen, but the truth is that it is happening. I'm afraid to move him, afraid to do anything but hold his hand and kiss him. So it was nice to be able to do something and see that he won't break if I move him. Hell Scott had to lift up his head and jostle him around to apply the Silvadene - I was impressed!

Anyway, they got the central line into the right side of his neck, and because his veins are clotted on both sides of the groin, they'll do the cath through that central line.

Dr. Stern will be doing his cath, he did his 2nd cath too. He came in and talked to us tonight while we were at the bedside. This cath is different than the 1st 2, and of course they have to go through the list of possible problems associated with the procedure. They always do that, but before this, it's mostly been the nurses that have delivered the speech, tonight Dr. Stern gave it. I don't know if he's always so grave, or if he's really as concerned as he sounded. See, this will be Nova's 3rd cath - the first 2 were a breeze, heart caths are common and mostly a breeze. Simple and everyday sort of stuff. But tomorrow's cath is different.

They're going to open up his pulmonary arteries on the right branch with a balloon - these are already much weaker than in a normal case because the surgery to "create" them was so recent, so there's a real possibility that they may tear when they stretch them. Dr. Stern said there's a 3 - 5 percent chance that that could happen. Seems small on paper, but there was only a 10-15 percent chance that Alexis wouldn't live through her surgery... Small numbers are huge when you're talking about the possibility of your child dying. Anyway, if that happens, it's entirely possible that Nova could bleed to death. "Catastrophic" was the word he used to describe that situation. He's also very concerned because there's another blood clot in the vein they'll be going through to do the cath. If it's dislodged, it could also cause serious damage and complications, or death.

He spoke slowly and clearly, with much concern in his voice and eyes when he said to me, "I feel I need to be honest with you about the possibilities here, and one of those possibilities is death."

Of course, I was terrified, still am. But without the cath, he can never get better. He has to have this done. Again I'm in the position of knowing that the thing that may save his life is also the thing that may very well kill him.

After we talked to Dr. Stern we went to the waiting room. He had left before we did, and when we came down the hall we saw him talking to Dr. Watts just a few feet from the waiting room. Dr. Watts amazes me. He's taken on God status for me - he has saved my son - he has righted what nature did wrong. He has performed surgery on arteries that are the size of hairs in many cases. I am in awe, and very nearly convinced that there should be a Church of Dr Watts, where I would be likely to worship, ok? The man is a miracle worker. BUT he's also very self-deprecating, and according to one of the nurses, the most pessimistic people of all time. He offers no false hope, accepts no thanks in return for saving hundreds of kids every year.

Whenever I talk to him, I leave scared, because he's so very honest (which is a good thing, really!) So when I saw them talking, I knew they were discussing Nova, and quite frankly, I hoped he didn't come talk to us at that moment, because I couldn't handle feeling any worse or being any more afraid than I already was. Of course, he came in. Of course, I, like a dumbass, asked for percentages. If it's 3% - 5% on the tearing, what is the chance of the clot dislodging?

And you know what he said? He said I can't let myself get caught up in the little numbers, that it would drive me crazy and overwhelm me. He's right, I was already overwhelmed. He said that if the artery tears, he'll be in there to repair it. He made sure we knew he's be there and would be taking care of Nova. Of course there are risks, but without the procedure, Nova will die anyway, and it's "the right time" to do it - he needs it, and he feels like it's a manageable situation.

Somehow, the man who has in the past been able to snatch away every crumb of hope in exchange for truth managed to make me feel better. Of course I'm scared shitless, my son might not live but he gave me the hope I so desperately needed, and trust me, if Dr. Watts offers hope, then there's hope to be had. He thinks Nova will come through this, and then be on the real road to recovery.

So the next time we visited, I asked what to expect him to look like afterwards. The answer was, "no one can really say, it's all in how well he does." Some kids tolerate it extremely well and have no down time. Others come out looking like they just came out of the first surgery - swollen, on lots of meds and needing a lot of support. I'm mentally preparing for the latter and hoping for the earlier. But then, Nova is already weak, and has proven that the easy way isn't the way he goes with.

So I'm asking you all to say an extra prayer tonight and tomorrow, light an extra candle, send some serious positive energy, however you do it. This is his crossroad.

I will try to remember to take the laptop so when he comes out of the cath lab and as the day goes on, I can update you - but I'm not making any promises.


  1. With these tears, the ceremony, in my home, has begun. I will call upon everything I love, everything I hold as sacred and true to save the boy, Nova, this precious child.

    ~ James

  2. Erin, I second James. All my thoughts and prayers are with you guys today. I have faith that Nova is going to come through this easily, and this will be the turning point in his recovery. Afterall, he's got an easy button now, right?

    All joking aside, please keep us updated as frequently as possible. Nova has become part of so many people's families over the past couple of months.