Two weeks ago, James was once again airlifted to Duke for a shunt revision. We were not surprised when he did not wake right away from the surgery as that had been his pattern for all the shunt revisions he's had this last summer. In fact, it actually seemed like he was waking a little better than the last revision. But the new turn came when he started having what is called "autonomic storming" or "hypothalamic storming."
If I understand it right, this storming is caused when the hypothalamus (which is the area of the brain that James' tumor is in) becomes damaged. This is the area of the brain that controls our hormones. With this damage, James' hypothalamus is dumping large amounts of adrenaline into his system. So these storms, although somewhat similar looking to a seizure, are actually huge adrenaline rushes. With each storming episode, James' blood pressure shoots up very high, his heart rate triples, he hyperventilates, and his muscles tense so hard that they could actually tear. They seem to be triggered by stimulation or agitation. Autonomic storming is not a common thing and so there is not a lot known about it or how to best treat it. It's still trial and error.
In an effort to rule out seizures as the cause, James underwent an EEG last week. Due to the stimulation, James ended up storming for the entire procedure - 45 minutes long. That was more than his body could handle and he ended up "crashing," with his blood pressure dropping quickly. He was coded and eventually needed intubated to protect his airway. The doctors were not sure that James, at that time, would even survive an intubation and asked us to tell him good-bye. Talk about catching me off guard!!!!! Although I've always known that I might have to do that someday, I never suspected it would be now. My heart was broken!!!!!!!
James pulled through that night and continues to fight. It has been a challenge over the last week to try to get him off the breathing tube (to clarify, he breathes on his own, but needs the help to expand the lungs enough to keep them healthy) and still control the storms at the same time.
To add to the mix, one of James' blood cultures from several days ago started growing something, so he now is being treated with 3 antibiotics. Let's see.......we have a PICU doctor, neurosurgeon, neurologist, endocrinologist, infectious disease doctor, and radiation oncologist. That is a lot of cooks in the kitchen!!! It was decided that a meeting was needed with everyone involved in James' care, in order to make sure that everyone knew what the other was doing and that everyone had the same goal in mind for James.
Yesterday was that meeting and I feel that it went very well. It started with an opportunity for me to tell everyone who James really is and what he means to us. I shared how friendly and how smilely James is....but more than anything, I shared how brave he is and that several months ago we (his family) promised him that we would fight with him no matter what. I wanted them to know that we intend to keep that promise to James. Fighting didn't mean that we were just going to let James have these storms forever, but it meant that we weren't calling it quits until James indicated that he was ready to call it quits. I don't know how he will do that, but I don't think it is now.
The thing that makes James' care so complicated is that each problem is intertwined with other problems. There's no way to just say, "Step 1, Step 2, Step 3......" We laid out a plan and expectations, but not a one of them will be easy. The plan for the weekend is to adjust his sedation medications to the point that he could be safely extubated. His chest x-ray showed that his lungs are a little sicker today than yesterday and that needs to improve before extubating also. At the same time, neurosurgery is working to get the ventricle (the right in particular) to decrease in size, as it has still been enlarged since the last surgery. The right catheter was adjusted yesterday and the drainage seems much better, so they are doing a CT scan today to see if the ventricle is coming down. It's possible that the decrease of this ventricle will help the storming episodes, since the increase in the ventricles always made it worse.
We're asking everyone to pray for wisdom for us and the doctors, for strength for James, and for God's will to be done. We are so encouraged by the love and prayers of everyone. I put the cards that have been sent to James all over his room.
The view from James' pillow.....can't wait til he wakes up and sees how much he is loved.
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