Feast of the Epiphany

5:45 am --- A nurse called us at about 2:30 to come quickly to the hospital. We'd laid everything out before going to sleep, so we were dressed and on scooters and to the hospital in fifteen minutes. At about 2:30 Calvin suffered, maybe, a stroke-- his heart and lungs stopped working. They resuscitated him. This is what we know:

-- his heart is very, very badly damaged. I signed the DNR papers, and if it happens again, he goes to those who have gone before us. We don't want to hold him against his will. His heartbeat has been high for days -- 80 - 100 is normal for him, he was at 170.
-- he had blood pumped out of his stomach from the resuscitation.
-- he's on a breathing machine, the same as when he was born.
-- he's getting fluids, but they were unable to get the shunt into his heart so I don't know what kind of nutrition he's capable of getting.
--he's suffering from Sepsis, which is essentially blood poisoning and organ failure.
-- and he's in a coma. No pupil dilation or movement.

So, Gosia's with him now, while I handle these things and get some rest. I'll go over later to be with him while Gosia gets some sleep.

I'll update later. Please give him your support in the many varieties, designs and colours that you all may give it.

With love.

Sean

9:50 pm--We just got home from the hospital and Calvin has worsened considerably.

He did get water on his brain during the seizure and it may have become infected, giving him a brain infection. They're doing a rather serious test via the spine to find that out. He's up to stage three antibiotics. They're putting a shunt into his heart to feed him... he's essentially where he was after he was born... A bit worse, actually. We'll see where he is in the morning, they seem to think we'll know more then, after the antibiotics are in.

He's really in a life or death situation, and we're as prepared as we can be for a phone call in the middle of the night.

I will, of course, write more when I know more.

Much Love,

Sean

1-4-09 So, as I expect everyone knows, yesterday in the mid afternoon, Calvin began to have a seizure that lasted between 70 and 90 minutes. Longer than five minutes is serious, thirty is enough to be fatal or cause brain injury due to swelling. One of the risks of this, what is called Status Epilepticus (wiki article) , is the brain and body not getting enough oxygen -- leading to death.

We initially got him under a heat lamp and kept his mouth clear, went to the computer and looked it up. We know that kids like Calvin are worse in cold weather and during fatigue, both of which were affecting Calvin -- however, he wasn't cold that day. We initially thought it was some muscle spasaming condition, since it wasn't stopping, but at the hospital they told us that it was a seizure. We read that longer than five minutes in abnormal, and Gosia decided that we have to get to the hospital. We got him to the hospital within fifteen minutes of it beginning thanks in part to our kind neighbour and his car. They realized at once what needed to be done, gave him oxygen and two anti-convulsants via an IV. After half an hour of it not stopping, they admitted him to the ICU where he went right after his birth.

There they give him more anti-convulsant medication and three valiums. He's currently on three anti-convulsants. When we saw him at 7pm, about 4 hours after it began, he could look at us with his eyes only without moving his head.

Gosia and I believe that the root cause of this is his sustained fatigue. He has not slept properly in about two months. He has not had real sleep in about a week, and I seriously doubt that he's been able to enter a stable REM state for quite some time. Last night, the nurses told us, even on all of those medications, he did not sleep through the night. There's nothing "wrong" with him, though. He's actually quite healthy. His white blood cell count was up, but they said today that it may have been due to stress. There wasn't any lung damage, due mainly to Gosia knowing what to do with him, and her good instincts.

He was quite alert today and very hungry. I fed him a yogurt and he ate the whole thing. Gosia tried giving him some rice soup, but he didn't want it. It was probably just too hard for him to chew and swallow it down. I went back to the hospital store and got him a can or Pediasure, and he drank the whole thing and wanted more... He hasn't lost his ability to swallow, which means no feediung tube.

He is much more rigid, though. That's treatable with therapy, though... hopefully, that's the only long term damage done by this episode, but we'll see. They're keeping him in the ICU for observation another day, them moving him to general care where Gosia will stay with him.

After visiting Calvin, we all went down to the cafeteria and had lunch. The hospital always has excellent veggie food -- unlike the hospitals I've been to in Amarica, the cafeterias here have excellent food at low prices. It'd nice to be able to eat well without feeling bilked.

The kids had their favorite -- rice soup (which they made themselves out of a bowl of rice and the clear soup they always offer here). They're doing well, and are of course worried about Calvin. But they're doing well. We've always told them the truth about Calvin, never "protected the little ones from the harsh truths" and such crap. So, when this stuff happens, they know how to cope. It's not a huge blow. Actually, hospital time tends to be fun time for them -- more visits to the 7-11 and eating out!! Through it all, they had a good time today. Right now they're napping... or pretending to. Eli's always amazed that I know the "shut my eyes and pretend I'm sleeping when Daddy comes in" trick... They're good kids, and I really believe that Calvin has been good for them, as he has for me. But it's a hard road, and we let them know that. They'll came to work with me this week, so again, it's a hard time, but it's a hard time spent with one of us.

I do ask you all to pray for Calvin, in all the many varieties of prayer that you all may offer. I know that prayer is a good part of the reason Calvin is here now for two and a half years, and I know prayer is a good part of the reason he's here 23 hours after this started. I'm not soapboxing here, but I know that prayer will be vital to him recovering from this, and I ask you all to please pray for him.

I'll keep this post updayed as I know more. All my love and thank you for everything.

Sean