8/14

Wow, we have had quite the interesting past few days. I am exhausted from it! So, as a warning - this will probably turn out to be a long post!

When I was at the hospital on Wednesday, even though Kameron was somewhat awake, I could tell that he was having a hard time comprehending a lot that was going on. I was a little concerned about this and especially because when he looked at me, I could see a little desperation in his eyes and almost confusion. I had asked him if he recognized me and he didn't nod his head, so I was afraid that for some reason - he had no idea who I was. I was also worried because his right eyelid was really droopy compared to his left. I wasn't entirely sure what might cause that - but I did know that it was a sign of stroke. So, I came home Wednesday night and worried about it that night but, I knew in the morning I was going to have to get ready to head to the hospital for his trach surgery.

Thursday morning came and I dropped the Lil' Man off at a friends house and headed to Tucson. About 20 minutes into my trip, my mom calls and says that she felt like she needed to be in Tucson with me that day and she was on her way. I started wondering why she would have the prompting to be there - and it got me really nervous wondering what could be wrong. Then I remembered what I had noticed Wednesday, what if they were going to tell us that something was wrong with Kameron's brain? On the way down I was looking up "brain damage" on my phone. (don't tell on me :) But, it was hard to get much information because I didn't know what I was searching for. So, I get to the hospital and when I get to Kameron's room, the pulmonologist (not Dr. Hueng, I can't remember his name) pulls me out of Kameron's room and says;

"We did the CT Scan this morning and it showed that your husband has significant brain damage."

My heart DROPPED.

Had I been prepared on my drive to the hospital to hear this news so that it wasn't such a punch in the gut? He told me that he had hemorrhages in his brain and then he went on to talk about his lungs - which I have no idea what he said about that. My thoughts were still stuck on, "brain damage." It's different to just think it's a possibility, but when you hear it come out of a doctor's mouth - it's not easy to hear, at all. He told me that they aren't sure how much damage was done or anything, he told me I would have to wait for the neurologists to come by.

Well, this happened at about 11:30 and I had to wait until 5:30 to talk to the neurologist!!!! Thank heavens my mom was there for support! I was going crazy all day. I was sick to my stomach, I couldn't think straight, I was close to going crazy. I had gotten his CT Scan report and was googling almost every medical term on there to see if I could make any sense of what they saw. I learned a few things but, nothing that brought me comfort.

Finally, at 5:30 the team of neurologists came in (an attending, a resident and an intern). They told us that they really couldn't tell us much until they ran some more tests. They wrote orders for an MRI and an EEG, which measure the brain waves. Great, so another day of waiting for answers. That night, right before we left, his night nurse said that they would do the MRI around 11:00pm.


This morning, I called the hospital and they still didn't have any reports from the MRI. So, I headed down there with about 200 knots in my stomach. I didn't want to talk to the doctors, I didn't want to talk to any nurses, I just wanted to avoid the hospital today. I wasn't sure what kind of news we were going to get. I kept praying that whatever the news was, that we could find a way to make it work. That I would be at peace with our future and that Kameron would be okay. I probably cried half of the way down there - I was just SO nervous about getting to the hospital.

When I got there this morning, I talked to Kam's nurse. He said that they had done the EEG and it didn't show any abnormalities. That gave me a little bit of relief. Then, the resident came in a talked to me. When she talked about the EEG she also said that it didn't show any abnormalities - which proves he isn't have seizures. She did say that his brain was a little sluggish but, we had already assumed that. She said that they were still waiting on the actual report of the MRI but they had seen the images and there were definately some things on his brain. I asked her about the hemorrhages and she said that there were teeny tiny, almost like little pin pricks filled with blood and they should go away without presenting any problems. What we need to be worried about is the areas that were affected by hypoxia (lack of oxygen). Basically, during all of this, certain parts of the brain hadn't gotten the oxygen and blood flow that they needed so, the vessels have shut down and have made these areas "low density". So, she told me she wasn't sure what areas were affected and how they would be affected and we would need to wait to talk to her attending before we could get any real answers.


So, we waited alllll day again. And in the mean time, the pulmonologist that had talked to me yesterday about Kameron's brain damage came in and told me that since Kameron is showing some progress, it looks like his case will be worth pursuing. I was like, "what?! did he really just say that to me?" I was a little taken back that a doctor would say that to the wife of the patient!!!


Anyways ... back on track. When the neurologist came tonight, she again confirmed that Kameron has these low density areas on his brain. She said that he has them on his; corpus callosum and the basal ganglia on either side of the corpus callosum. The basal ganglia has something to do with the transfer of information for coordination and movement. The corpus callosum is the bridge that sends information back and forth between our right brain and our left brain.


She said that there is no way to know how much damage has been done. It could be weeks before we know any of that. I asked her if the low density areas can repair themselves and she said that our brains usually don't regenerate but, they can relearn things. So, if something is affected, his brain will just figure out a new way to do it.


I asked her if his brain has been injured because of the lupus. She told us that our brains are so interesting, the way they react to things. So, there will never be any definate way to determine what caused the brain injury. It could be the lupus, his high blood pressure, lack of oxygen, a combination of all three ... who knows. So we will never know exactly what caused all of this to happen.

Art asked if he is just sluggish because of the sedatives still being in his body, since they haven't been cleaned out because of his liver not working right. She said that could be a possibility. We will just have to watch him the next little while and see.

What she told us, is that with Kameron's case, she doesn't want to worry about the images or the scans or the tests. Her main concern right now is if he is progressing clinically each day. That is her main concern. If he is doing that - then she will be pleased. If he was just laying there like a vegetable, I would see the reason for concern. I am glad that she told us this because since Wednesday, every day I have seen improvements - even in the few hours I am with him.

Yesterday when we were there, Kam would move his right hand and he would barely be able to keep his eyes open for more than a few seconds. By the end of the day he was starting to move his neck. He was also able to recognize me and Kason (when I showed him a picture), so that was a relief!

Today, he was able to move his left hand. When he would squeeze my hand today with his right hand, I could tell he was just a little bit stronger than yesterday. Today he could keep his eyes open for much longer periods of time and he was awake a LOT more than he was yesterday. I would say yesterday his wake/sleep ratio was close to 10/90, today it was closer to 30/70. He started moving his right shoulder today. And even his right eyelid, was a little less droopy today. He was also moving his mouth and tongue a LOT today! He kept trying to chew on his breathing tube but, he didn't have the strength to bite down. So, there was definately progression today. This makes me very optimistic and positive.


I realized on the way home how important it is that I continue to focus on all the little, positive things. Like the fact that he moved his left hand today, or that he moved his shoulder. I will lose all optimism if I focus on the negative things; like why won't he do this? or that?

So, we will see what happens. We will just have hope that each day he will have a little bit of improvement.

Don't ask me about anything else that is going on because I really can't tell you much. His vent setting is down to 45%. He has a virus called CMV. A lot of us have been exposed to it and even gotten this but, because we have immune systems, we never see the effects of it. With Kameron, since he has no immune system, it's affected him. The infectious disease doctor said that CMV often attacks the liver and the lungs. SO, they put him on another chemotherapy drug (that is nowhere near as strong as the Cytoxan), this drug is called: Ganciclovir. Still doing dialysis on Tuesday, Thursday & Saturday. They are planning on doing the trach sometime this coming week!


Sorry for the days hiatus ... I had alot on my mind!