I feel like I have been in an intense battle all day. Thank you all for your prayers throughout the day. It is amazing the difference having prayer warriors makes. We started the morning with an MRI that showed no tumor growth or changes in the brain. Ruled out any other physical reasons for why we have had such sudden behavior changes.
The Lord brought such comfort this morning through my oncology team. I love them so much. To see the concern, the compassion, and the frustration that they have towards this situation encourages me to know we are not alone. Each of them love Jonathan so much and are doing the best that they can. Even the social worker was brought to tears. We just can't stand to see what happens to our precious Jonathan. Trust me when I say that it is horrible.
Dr. Foreman was able to capture the situation well and give words to what I feel. What we are dealing with is hypothalamic rage. It stems from the hypothalamus being severely damaged. He literally doesn't have a way to use the coping skill needed to calm down and not overreact. Dr. Foreman said that you want another part of the brain to be broken...but not the hypothalamus. All the behavior control is centered there. He said there is nothing harder to deal with and more heartbreaking than a hypothalamic rage because you literally can not reason with the child. There is no talking down. There is no changing the mind. It just has to run its course. This was hard to hear, even though I have been saying it forever, because its just one more thing that we can't do anything about. My mommy heart wants to, needs to be able to fix it. I need to be able to take the pain away. I need to protect my other kids from the horrifying experience. And I can't. It is not fair.
Shortly after oncology came, the psychiatrist came in. There is something that just is not setting right with me regarding this doctor. We have had several encounters in the past where he is contradicting himself, forgetting what he said previously, and where he tells me to do something but then acts like I did something without his permission. And he always messes with Jon's meds. That is a very thin line to be walking on. He is very conservative... I think he has some situations go wrong and it has caused him to not be aggressive in treating with medication. I understand the fears and concerns. But I on the other side of this situation am living with the consequences of his fear and lack of intervention. I can tell you that the lack of help is as debilitating and dangerous as any side effect the medicine will have. So while I appreciate his effort, I don't really care for his method. But he is all I have.
He wanted to try a medicine named phenobarbital, an old seizure med that causes sedation. At first it appeared that this med could be used as a rescue medicine. I was ok with a sedating rescue drug. Later when the inpatient oncology docs were telling me the plan, the plan had changed. This was not a prn rescue med. It was an every day medicine. I was not ok with that. I don't need more every day medicines. Especially not everyday meds that are going to make him even more tired and irritated than he already is. What I need is an emergency plan. To top it of, the docs informed that they were going to take him off the Prozac. So not ok with me. It honestly seems that every time we are in the hospital the psychiatrist takes advantage of the opportunity to take him off a medicine. When they told me that, all of sudden I was done agreeing with them and I told them so.
I told them my feelings about the way the psychiatrist is handling the situation. I told them that the only way I would even be willing to use the phenobarb was if they gave him the first dose here and kept him for observation. They were getting ready to discharge us with the instruction to try this med for 10 days and then follow up. So my refusal to leave without observation bought us more time. And I told them we were not changing the prozac. Prozac combined with zyprexa makes a medicine called symbyax. This medicine is the one med that brought Jon stability after two years of psychosis. No way are we touching this medicine.
The more I thought about, prayed about, and researched the medicine the more I didn't have any peace about. So I finally was able to explain to the nurse in a way that finally made sense exactly why we were here. Of course I have been saying the same thing all day and no one seemed to be getting it. We were going to have a conference of all the doctors but most of them had already left. So instead the attending came in and listened (finally) and came up with a reasonable plan. We are not doing the phenobarbital. And in the morning we will be discussing an emergency plan that is reasonable and effective and agreed on by all involved.
I am not sure if the psychiatrist is going to agree. I am not sure he is even going to want to be involved after tomorrow. But I am praying he will be open to listening and willing to take a risk. All I know is that I am leaving only when I have one thing....a plan that includes emergency medicine that works fast...not something that might work in an hour or two. But immediate.
Its ridiculous though that this has to be so hard. Because he has had seizures in the past, they have given me emergency anti-seizure meds that work within minutes. Because he is adrenal insufficient, I have injectable cortef for an emergency. Why can't they give me some tools that will treat the raging crisis within minutes. It doesn't make sense.
So tomorrow may be a fight. Might not be. We need your prayers. I am so thankful for your continued prayers and love.
Until tomorrow....
