Update: PICU stay

Right now we're doing SOMETHING right. We aren't 100% on anything yet.. I guess we'll find out soon.

They did a CT scan and really didn't see much difference in the scans of Carsyn's head from last time. BUT then they did a shunt tap. The pressure in his head should be anywhere from 8-15. His was 39. and there showed to be a little blood on the scan and the tap.

The blood is not something they are too terribly worried about. It's normal for kids like Carsyn to have a little bleeding when there are changes in pressure in the head. The only problem is getting that pressure down slowly. If we go too fast we risk him hemorrhaging. So, right now they have Carysn on a few medications to keep pressure from getting worse and now they have a drain in his head.

They drilled a hole in his skull, just small enough to fit a tube into to drain some of that fluid. They can't just change his shunt right now. If they did they risk clogging THAT shunt too. Blood turns to protein in the head. Protein clogs the tubes. His protein levels should have been below 200.....he was over 600.

So the plan for right now is to keep draining until his neurosurgeon comes back either tomorrow or tuesday. He will then have a shunt revision and his GJ tube placed.

At this time Carsyn is breathing over what the vent is giving him. and they have weaned him down to extubating levels. Meaning, they could potentially take the tube out as soon as he gets the shunt change.

But I'm pissed. I've been telling his neurosurgeon in Buffalo that I was worried his problems were the cause of a malfunction. They told me there was no way it was the shunt. THREE TIMES. FOR THREE MONTHS.

Three months the pressure in Carsyn's head has slowly been increasing. He's been in pain. and no one would take me seriously.

So on top of all this frustration I am three hours away from my 9 month old daughter. Whom I will only see Saturdays and Sundays.


This is killing me.

And we don't even know if this is 100% the problem.

They are talking about him being here another 2 weeks...

I'm so tired of crying.

more updates to come.

thank you. Please keep praying that we've figured it out and can take my baby boy home soon. 

thank you guys so much. It means the world that you care. At least I have some comfort in knowing that I have people rooting for him.

I'm on a hospital computer so I can't post any new pictures. Soon, I promise.