Tough Week

This has been a tough week. Logan had a palliative care appointment yesterday and saw his neurologist today. We discussed comfort care at both appointments. I went into the palliative care appointment thinking it was going to be routine and nothing much to discuss. Little did I know that my emotions would get the best of me. The doctor always asks such emotion provoking questions that draw out every tear in my body.

We discussed symptoms Logan has been experiencing. To be honest, his bad days are more than his good days. He makes a lot of uncomfortable faces throughout the day and has one in particular that we call cry face. He doesn't cry with tears but we know what the face means. He grinds his teeth a lot and postures in uncomfortable positions. We haven't been able to find a source to the pain such as an ear ache, tooth pain, constipation, etc. After describing how often and what his symptoms of irritability are like the doctor felt confident that this was neuro irritability. With the degeneration of Logan's brain, it is expected that he will have continued challenges with sensory processing. He continues to lose skills, become more and more lethargic, and less interested in what is going on around him.

Don't get me wrong, he does have good days and good moments. Tonight I was able to stroke his hair and calm him. He really seemed to enjoy it. Unfortunately that is more rare these days. A lot of times touch can set him off. So we really discussed moving more and more toward comfort management. It is a fine balance right now as adding more sedating medications for Logan can be problematic. He is on oxygen many nights of the week as when he sleeps he does not breathe deep enough to keep his oxygen levels high enough on his own. If we add more medications with sedating properties, we may encounter worse problems.

So for now we are maximizing the dose on a medication called gabapentin. He is on the max dose now and we are adding a medication called amitriptyline. Both these medications are to help with the neurological pain/irritability. I pray these provide him some relief and if they don't we will have to explore heavier options for control of symptoms.

Logan has two neurologists. One focuses on seizure control. We saw that doctor two weeks ago after starting Logan on  a new medication called Felbamate. For the first two weeks we saw a significant decrease in Logan's seizures. As we continued to go up on the dose the honey moon period wore off and his seizures are back to the volume he was at previous to the medication. We continue to move forward with attempts at seizure control but I know this is more of a dream than a reality. His type of seizures are extremely difficult to control and with his brain actively changing, I don't expect that medications will ever keep up and control what is going on.

The neurologist we saw today is the one Logan has been with since he was a year old. Dr. B. knows us well and continues to remain in the picture to monitor Logan's disease progression and stay on top of the neurological changes he experiences. Logan has something called clonus. For him this is shaking of one of his legs at a time. It looks like a rabbit thumping its leg. This is his brain and muscles not being able to talk to one another. Now we are seeing that his arms are getting rigid where he is locking up at the elbows. Normally Logan has very low tone. He cannot hold any part of his body up independently. When I started noticing the rigidity in his arms I knew this meant something. I was hoping it was a side effect of a medication. Dr. B. says it is related to his degeneration.

Another discussion we had with Dr. B. is the need for a CT scan of Logan's brain. He has had many MRI's and one CT scan of his brain. Normally we do an MRI to see what type of progression Logan has in the degeneration. With Logan's irritability, Dr. B. wants to rule out hydrocephalus. This is where there is an accumulation of cerebrospinal fluid in the brain causing excess pressure. This causes many side effects such as vomiting, irritability, and headaches. Because Logan doesn't have an official diagnosis and we have no idea what to expect with the progression of his disease, Dr. B. wants to rule this out. It is unlikely that he has this but it is worthy of checking. Logan will have the CT scan of his brain next week. Thankfully he will not need sedation as it is a quick scan!!

So here I am, trying to process this week. One of our day nurses is leaving for a new job opportunity and tomorrow is her last day. She has been with us for three years. She is an incredible person, caregiver, friend, and advocate. Logan truly loves and adores her. She has spent countless hours with him watching over his every move making sure he stays healthy and happy. She knows all his likes and dislikes. It will be so hard to not have her around. She may pick up shifts occasionally and that would be such a treat but losing her face 3-4 days a week will be hard. I have depended on her for so much and she just seems to make things happen so I don't have to worry about them. We are so excited to see her move on to a new opportunity. She deserves to grow her nurse wings as she has so much to offer to so many people.

So as I began this post, it's been a tough week. This is the first time in a long time that I have felt apathetic to almost everything. I feel lost, scared, out of control, and plain numb. I'm mad, sad, and at times feel helpless. I really don't like feeling this way. Normally I am able to realize that this is part of the process and that the feelings will subside in due time. This time I am getting frustrated with myself as I feel my hope and ability to cope is slipping. I take pride in my ability to move through these challenges all while experiencing the emotions but coming back to my normal baseline of being. I will get back there eventually but this week has shaken something deep inside me. I worry that as things get harder, my coping will get thin. I don't want to lose myself and certainly don't want to be less available to my family. Lauren and Joel need me just as much as Logan.

I have been rocked this week by the feeling of fear that I get that I can't handle this or that I won't be able to handle it as it gets worse. I don't want to wallow in tears everyday and I don't want to feel sorry for the situation we are in. I want to enjoy my family and all the wonderful things we have together. I know I am supposed to allow these emotions in and to experience it as it comes but I don't want to. I want to feel some control and try and keep my head a little above water. (I never learned to go under water without having to plug my nose!).

I know people will tell me that its okay to feel this way but I don't want to! I don't want to be in denial but I also don't want to feel completely out of control. It is not in my being to lose control of things without it bothering me. I have hit rock bottom in the past where I felt as though there was nothing left. I will never go back there, ever. So if I beat myself up for crying or letting people see my weak side, please know it is my way of trying to stay strong. I am still experiencing the emotions, I'm just trying to do it in a way that works for me.