Thursday, June 2, 2016

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.




Thursday, April 14, 2016

Frustration

I'm at about at my wits end. I don't know how much longer Joel and I can sustain our work/life balance with Logan's needs. We are short many nursing night shifts per week and are burning the candle at both ends to cover it all. We have a schedule coming up where there are stretches of four and five nights without a nurse. 

It wouldn't be a problem except that Logan isn't your usual kiddo. He needs tending to every 1-3 hours at night. When we don't have a nurse, one of us sleeps on the couch with a baby monitor and alarm clock and does all his cares. Sometimes we split the night. It just depends on who has the toughest day ahead. 

We are living sleep deprived and stressed out. We have no idea when our shifts will be filled by the company. Private duty nursing is not as well sought after as a job than most other areas of nursing which  really sucks for families like us.

On nights when we have no nurse, our daughter Lauren's bedtime routine is tough. She doesn't understand why Logan gets so much attention. This wouldn't be such an issue if Joel or I was a stay at home parent but unfortunately we don't have that luxury. 

I just needed a moment to get out these frustrations. It sucks and it isn't fair. I wish I could provide for Logan's every need but I can't. I have to rely on others and when that relief valve isn't there, I feel like a pressure cooker ready to explode. I'm sick of worrying if we have a nurse coming on for the next shift. I'm sick of Joel and I bickering over the situation. I'm to the point where I tell him I can't talk about it otherwise I may completely lose it on him! 

Ugh. This really really sucks and it feels like there is no end in sight. I don't ever want this to cause us to start resenting Logan or seeing him as a burden because he is not and will never be that but when stress is in play, it's hard to filter emotions! I pray for a solution soon and if that solution is not more help, I pray we can find a way to make this work for our entire family unit at least in the short term. 


Sunday, March 13, 2016

Code Status



We have been experiencing an early spring here in Minnesota. Logan has been out on a couple walks through the neighborhood and has spent some time in the yard with Lauren. It is so nice to get him out of the house. He has some new fancy sunglasses to help his sensitive eyes when he is out and about.

Last week we went and saw his pain/palliative care doctor. Along with the increase in seizures, Logan has been experiencing other changes since we saw her in October. Since we now know his type of seizures are very difficult to treat with medications, we have come to know that we may have to find other ways to comfort him. He is having periods of restlessness, constant generalized seizures, grinding of his teeth, and upset facial expressions. Along with that we are noticing more neurological irritability. When he is repositioned or picked up, he stiffens up and appears uncomfortable. He is less interested in toys and some activities at school. His eyes are more sensitive to bright lights as well.

I went to the palliative appointment to discuss these concerns and find a way to improve his quality of life. She was in complete agreement with my requests for pain management. After asking questions of his nurse and I, she said his symptoms and changes are to be expected as he continues to have neurological decline. With that, we are making some medication changes to help with the neuro irritability, pain, and oral secretions. It feels good to know we are adding medications that may make his life more comfortable. It is so painful to watch him especially when he looks up at me with looks of pain. He does not cry but has multiple facial expressions that we know are related to being upset and/or in pain.

Now for the emotional part of the blog. Be prepared as I talk about a very tough topic...

The second and more controversial topic we discussed was code status. We have decided to put in place a do not resuscitate order for Logan. What does this mean? It means in the event his heart stops, we would not want CPR performed. This sounds extreme but is actually an unlikely scenario considering Logan's other issues. We don't want an extreme measure performed on him as most likely in that case it would be unlikely he would have a meaningful recovery.

Aside from that, all other life saving measures will still be performed. He has an artificial airway and feeding tube in place so those decisions have already been made. If he was to stop breathing, which is a much more likely scenario, we do want ventilator efforts made. At that point we would decide how to proceed.

Having a degenerative brain disease means we will continue to see loss of skills, decreased ability to swallow, and decreased effort at breathing. When that happens, Joel and I will decide what to do. If he became ill, we would place him on a ventilator and try treatment to get him through the illness. If for some reason we could not get him off the ventilator, that would be time for bigger decisions than even a do not resuscitate order (no CPR) would bring. I don't want to ever have to make the decision to remove him from a ventilator but having him live on one at home seems like pretty poor quality of life for him. I know many people live on ventilators, but if the time came where he was not strong enough to breathe on his own, he would most likely be very weak and unable to do anything at all.

So, yes we made one very big decision for Logan that no parent should ever have to make but we aren't living in a typical day to day world. It sucks and is unfair that we have to think like this but as his parents, it is our duty to do everything we can to make this life the best possible for Logan. This is a very personal decision for us that did not happen overnight. We have discussed this many times and waited to do this until the time felt right. Any other parent may decide differently and that is okay. If we had no idea what we were up against we would probably decide differently but we know that Logan has a life limiting disease.

So in the meantime, we will continue to love him like crazy. I think it is time to start getting Lauren to talk about Logan more. She gets upset when I try to talk to her about his future. She shuts down on me whenever I bring it up. I think she knows what is going on but is trying to stay strong for us. It's time for some professional therapy for her and maybe us. 

So now after all that heavy writing, how about something happy! I am wondering if any of Team Logan would be interested in sending him cards, letters, or pictures. As it is getting harder to find things for him to enjoy, I think it would be nice for him to know how much support and love is out there for him. If you are interested, email me at rnzacher@gmail.com and I will send you our address.

Thanks for your continued support and prayers. It means so much to all of us.

Thursday, February 11, 2016

Grief

Today we saw Logan's other neurologist. He has two of them. The first neurologist he has been seeing since he was a baby and the new neurologist that treats his seizures. Today it was the neurologist we have been seeing for years. I was really looking forward to this visit as he knows Logan and our family well and he does a great job at explaining things for me.

Last week Logan had an overnight stay in the hospital for EEG monitoring. This was monitoring for seizure activity. In the time we were there we found that he is having multiple types of generalized seizures. Generalized, meaning they fire from all areas of the brain. They manifest in many ways including myoclonic seizures which are a single jerking movement, tonic seizures which are the rigid and more lengthy seizures, and the tonic clonic where are rigid but also has some rhythmic movements accompanying and can be quite upsetting. In between seizures his EEG is showing pre-seizure activity that isn't always firing into a seizure. We wouldn't see any difference in Logan when these happen.

When we were in the hospital, the neurologist explained that Logan has epileptic encephalopathy and the more specific syndrome or type is called Lennox Gaustaut. This means the types of seizures accompanied by his developmental delays puts him into this category. This category of seizures is also found to be difficult to treat.

We left the hospital with a plan to increase the amount of times per day he is receiving his medications to keep the level of drugs higher throughout the day in his system. If the levels still aren't high enough in a few weeks, we will re-check labs and move to another medication called Felbatol. This has some side effects that we will monitor for such as liver problems and bone marrow problems but the chances are low therefore the need for repeated lab draws to monitor for changes.

Today's visit wasn't to come up with more plans for seizure control. This neurologist is working to track Logan's disease progression. Today we discussed the seizure changes and he did a great job at explaining it better for me. I am someone who needs time to absorb new information and formulate questions. When we were in the hospital, it wasn't until I was already home that questions started popping in my head. It was perfect timing to have this appointment and I knew that this doctor would be able to explain things in a way that would make sense to me.

We also talked about the other changes with Logan such as the small change in the macula of his eye (central vision) and the increase in shaking of his legs. He asked if Logan has been more sleepy as of late. I said no different other than after the medication changes. He said we may see as his disease progresses that he may become even more lethargic. He also said the eye change was part of the degenerative process for Logan.

Of course I was crying at this appointment. I always do. I feel very comfortable with this doctor and he does a great job supporting myself and Logan (and if Joel is there too). We talked about what the future might hold for Logan. This may include more difficulty with swallowing and trouble with breathing. This was probably the first time we really talked about the future symptoms to watch for with this much weight to it. In the past things like this have come up but seemed in the distant future. I am not saying they are possibly around the corner, but let's be honest, they are sooner than later. I have to be prepared for things to change at any point in time.

We have been so blessed to keep Logan as healthy as he is and to stay out of the hospital. We have been blessed that his disease is only progressing in stages and that between the changes, we have months of reprieve from the huge waves of grief. Right now we are in a period of change and the emotions come like tidal waves. I know this fog will pass and it won't hurt as much but right now it is extremely painful.

So for now we continue on. Praying for some relief of seizures but now know that it will be an uphill battle. If anyone knows how to get medical marijuana for cheap in Minnesota let me know! It is legalized here for epilepsy but is just too costly at this time. I would love to be able to afford it but could only probably swing a few months worth. Hoping this summer when chronic pain becomes one of the conditions allowed into the program that there will be more demand and cost will go down.

On a happy note, we officially became members of our church last weekend! We were welcomed in front of the whole congregation. It was so wonderful to be accepted into this wonderful family. Thank you Elk River Lutheran Church! Next plan is to have Lauren and Logan baptized. We were never members of church when the kids were born but have always wanted to make it happen. Now that we have a church to call home, it is time!

Again, thank you for reading this blog. It is a very therapeutic way for me to process feelings and provide updates to friends and families. We feel the support from each of you every day. Prayers are always welcomed!