100 Days Old

In Kindergarten we make a big deal out of the 100th day of life, yesterday we praised God for the first 100 days and prayed for a million more.

I was awoken to Dr. Pincus and LeAnn, Owen's nuerosurgeon and his nurse practioner, checking in on Owen. Dr. Pincus said that since there'd been no other seizure activity the most likely cause of the seizure last night was the change in pressure from the shunt replacement surgery. He said let's get this breathing tube out of him this morning and see how he does.

It's so hard to see him on the breathing tube we know he hates it. But they've kept him very sedated to deal with being on the breathing tube so to get him off the tube we have to stop the sedatives and make him very uncomfortable in order to remove it. They stopped his sedatives around 9 am. He finally started opening his eyes around 1:00. He'd open them then close them. Around 2:00 they changed his respirator setting to spontaneous meaning it would only breath for him if he stopped breathing and they said he would need to stay like that for about 30 minutes to show them he was going to do well on his own (well we should have known that meant 2-3 hours in doctors time). Around 4:00 they said it was okay to finally extubate him. As soon as the tube came out Owen started screaming a silent scream. After a few minutes you could hear a little raspy sound when he would cry - it would be hours before his voice would come back. He cried and Ed and I comforted him. As long as one of us was holding his hand he would be okay but if we tried to let go he would start crying again.

The nurse gave him some Tylenol to help him rest without actually sedating him and to help with the discomfort the tube had caused. We were told in a couple of hours he could finally eat something (he's had no food since he was life-flighted on Sunday). Of course it ended up being several hours before they would finally let him try some pedialite and when they did he did very well with it.

We also received really excellent news from his cardiologist. They looked at his ECHO from yesterday and found that he no longer has pulmonary hypertension. We were told that he would likely have this problem with his heart for several years but today we were told he no longer has it to deal with. The right side of his heart is no longer enlarged and is functioning properly. Though we believe he will always have an enlarged heart (because of all the people who love him).

All in all today was a quiet, (mostly) peaceful, good day.

Hoping the next 100 days are much better for our little man.