Thursday, November 10, 2016

Gifts

In the past couple of months we have received so many gifts. Adding hospice care to Logan's team seemed to be a death sentence. Instead it has been a door to a new journey that at times is beyond painful but also joyous. Logan has an incredible team around him that also wraps their arms around our family to walk along side us during this journey.

Logan's home care team has stepped up to this incredible challenge. His team of nurses have shown such strength and advocacy for Logan. They fiercely work to ensure every day is comfortable and filled with as much joy as possible. They watch out for Lauren and even Joel and I! They do things far beyond the call of duty. As a nurse myself, I would have never thought of the profession as I now do. The respect I have for each of them to work day in and out in someone else's home. They are true heroes and angels on earth. We are beyond lucky to have been granted the services of nursing care. Without it, Logan would have never experienced the quality and longevity of life that he has. 

Another gift that to be honest I felt may be a burden is our hospice team. I say this transparently not to the individuals but to the new entrance of complications in our somewhat organized chaos. More people meant more communication, more confusion, more time. Yes those things have all come up but as we settle into a routine, they are a blessing not a curse. Logan has a great hospice team that work tirelessly to meet his goals. They have brought people into our lives that have provided us immense support even when we didn't think we needed it. 

On Tuesday one of those incredible people was Joseph from the Issac Initiative. He started a non-profit organization aimed at providing free family photos to those with a child who has a terminal illness. Through our social worker with hospice, we were connected with Joseph and were fortunate to be given the gift of memories by this wonderful angel on earth! 

I of course stressed over the outfits we would wear and at the end of the day today I thought, why? When Joseph aka Yeti showed me photos as he took them, I didn't look at the clothes I looked at our faces and the expressions. My heart was filled with gratitude and joy. Logan was mostly alert and Lauren put on a good show. Zeus even made some great appearances. 

After the photo shoot which was simply in our backyard, we talked a little bit with Joseph. I told him that in the past I had always wanted photos without Logan in his wheelchair. I didn't want to remember him that way. When I got home from work that day it was a rush to get pictures in with the fading sunset thanks to daylight savings! Joel had quickly taken Logan to the backyard amidst a pile of beutifully fallen leaves and there he sat in his chair. We all took pictures with him and the chair was part of him. It is him and it is how he can be remembered. It is ok! He didn't need to be held in awkward positions in our laps just to help me feel better and minimize his disabilities. He was as is and it was freeing. 

Thursday, September 15, 2016

Decisions we've made

This is going to be a really hard blog post to write and I'm having a hard time trying to figure out where to start. I have started and restarted this post many times. I keep procrastinating but it is time to let everyone know what is going on in the world of Mr. Logan.

It's been a really tough couple of weeks. As most of you know, Logan has a neuro degenerative disorder that doesn't have a specific name/diagnosis. We are on a roller coaster of unknowns and have spent the last five years learning on the fly. Unfortunately having a neuro degenerative condition means it is life limiting. We have always known this and I hope I have helped others understand the path we are on.

Having a child with a life limiting illness means the end may come sooner than you wish it would. Right now, we are not at the end but we are starting to prepare for it. Logan is now enrolled in hospice care.

If I could make the noise of brakes on a car coming to a screeching halt, this is probably what many of you readers are thinking or feeling. What?!

Hospice. It's true. We have started the transition to end of life care. Does this mean we are expecting Logan to leave us soon? No not at all. What it means is that we are putting our entire focus for Logan and our family toward giving him quality of life and comfort. We are no longer going to push for maintaining or improving his ability to function, instead we are going to support him as he tells us what he needs during this next phase.

Many people have asked me, "what has changed?" It is hard to describe as Logan's changes have been so rapid and have ranged from small to large. His seizures continue and will never be completely controlled by medication. In fact, they may continue to worsen. His discomfort is only mildly controlled by over the counter pain medications. He is doing more grinding of his teeth, shaking of his legs, and posturing in discomfort. He is requiring oxygen almost every night.

The other two most profound and recent changes are his eyes and heart rate. When he is awake and lying still, his heart rate is around 100 beats per minute. When he sleeps it is around 80-90. He is now having periods when he is completely awake and still, where his heart rate is dropping to the 80's. During these periods his breathing also slows. Most people would see this as a relaxed state but I worry that it is his bodies way of relaxing too much.

The symptom change that has bothered me the most is his eye control. I thought he was having a new type of seizure but I am pretty sure it is the lack of muscle strength in controlling his eyes. His eye balls are rolling upward and it looks like he is trying to look at something up above him. It seems to be worse when he is tired. He still has times when he can focus his eyes but it only lasts so long. It is so hard as I'm sure this bothers him to not have control over where he looks. It really upsets me too. I was once told that the eye muscles were some of the strongest in the human body and when they start to go it is a sign of profound degeneration. Seriously why can't it be something else that goes, why does it have to be eye control. Life is hard enough for him.

So back to the word hospice. We are at a tipping point where his team of palliative care providers are no longer equipped to provide the guidance needed to manage Logan's symptoms. Hospice is that team we need. We now have a hospice nurse, social worker, medical director, massage therapist, musician, and access to bountiful services. The doors have opened in ways I never imagined.

Logan will remain at home and we have decided to make his advanced directives to reflect this. We do not plan to hospitalize him if he becomes sicker than we can manage. We will not perform life saving interventions at this point either. I still can't believe I am typing these things being an ER nurse. I am so used to being part of a health care team that does everything imaginable to save a persons life. Now I have to completely change my way of thinking. Trust me, this has been the hardest part for me because what it means is that there is a day when I may have to be part of the decision to let Logan go without doing the full court press.

I know we will not be completely alone, what I describe is what I am used to, a clinical setting. We are so fortunate to have our home care nurses 24/7, a hospice team, and of course our amazing family and friends. We are not alone in this journey and He is with us every step of the way.

I would be lying if I said I am at peace with this. I am not there yet, I have a lot of work to do myself to make it to a place of accepting our fate. I didn't think hospice was in our near future. Every day though, I realize how thankful I am that it is here. Not to mean I want Logan to leave us, but that now we have a way to give him what he needs to live every day comfortably.

I know some day there will be a hole in our hearts and in our home. We have a seven year old that is living through this as well. She is so strong and I pray every day that she comes out on the other side a stronger person. I pray that Joel and I hold each other up when we need it as we have always done before. And for Logan, I pray for peace and relief. He has taught us all more than we ever imagined and now it is his turn to rest.

Thank you to everyone for the continued support and prayers. This journey is hard and at times painful but having love and support around us continues to lift us up.




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.