It’s been a while

It’s been what feels like an eternity since I have blogged. The last post was announcing Logan’s passing. It will be a year this coming May and it’s already April. We have gone through the motions of the first year with many ups and downs. It’s been so far from easy. There are days where the grief slaps you in the face when waking up. Others on the drive to work. Sometimes right in the middle of the day when someone says something or you see something that is a reminder. Other days it is during the end of the day reflecting on something and he comes to mind.

Some of these moments are welcome as they are such a great reminder of such an incredible little boy. Other days it dredges up the really hard times and sometimes what feels like a traumatic experience. There are moments of pain, regret, anger, joy, appreciation and the list goes on. It is this insane roller coaster where you feel like someone else is in control and you are just on for the ride. 

I am still hanging on to the bar on the roller coaster with my belt securely fastened. Some days feeling it tighter than others but I’m still in. I wish daily that Logan was sitting right there next to me. He may not be here but he is here! My boy is still here in my heart and the heart of so many others! 

On to his next journey

Our dear Logan Michael passed away peacefully this morning May 27th at 12:20am. Joel, Lauren, myself and his grandparents were here to see him off on his next journey to heaven. Logan has left his mark on this world and will now be with loved ones awaiting him in heaven. He is now free and we are comforted knowing he will no longer be in pain. Our Bubba will be sorely missed but we know he is smiling down on us!!

Rough Evening

This evening Logan had a tough time. He has had a good couple of days of comfort and was mostly seizure free. Today he seemed quite alert and as the afternoon and evening went on his alertness turned to agitation. The seizures worsened and he required many extra doses of the versed drip. Our nurse had to call hospice as he exceeded the number of doses of versed that they would have wanted him to receive. Thankfully the doctor was contacted and the increased dose was ordered. The hospice nurse came and changed the dose and now he is very sedated. His oxygen level is pretty low right now but he is peaceful so we are going to let the medication clear his system a little bit. He's what we called "snowed"!

Today we changed his versed drip to a lower volume of fluid but the same dose. He was still on enough milliliters of fluid that it could sustain a person longer. We would love for him to live longer for our sakes but it is not fair for him. The change in volume will allow his body to rest as he continues his journey on earth. We know this change means things will begin to progress. My gut says we will see many changes this weekend. We saw more than I expected tonight but I trust that he is getting exactly what he needs to feel pain free. Logan does everything in his own time and his own way. He carves a unique path that you can't predict. We will continue to surround him with love as the days carry on knowing the next path for him will be full of light, joy, and freedom.

Goodbyes

This weekend we had many visitors. My sister, her fiancée and my niece and nephew came for the weekend and they left today. My grandma was also in town and was able to see Logan too. It was so hard to see them say goodbye to Logan. All I could think was that they are probably saying goodbye to Logan for the last time. I lost it. My heart was breaking. 

I'm going to miss Logan so much and I know so many other people will too. He's not just my son, he is brother, nephew, grandson, great-grandson, friend, and so much more. He is loved by so many. As people come in and out of our house so many memories are shared, tears are shed, and most of all love surrounds us all. 

It's like Logan is in this bubble of peace right now. He is resting so well. It is rare to see him awake. He still looks as handsome as ever with his soft skin, long lashes, and wild brown hair! When I hold him he feels thinner but when I nestle him in to my cheek it is still my bubba boy there. Somehow amidst all he is going through he can still comfort me. Soon he will be in heaven doing all the things we so wished for him on earth. 

Things are changing for Logan. His little body is telling us he is tired. Logan had a decrease in his feedings a couple weeks ago as his body was getting overloaded with all the fluid. In the last few days he has been giving us more signals that his body is needing less and less. Because Logan has a neurodegenerative disorder and because Logan likes to be unique, a lot of his symptoms aren't classic! These last couple of days his heart rate has been high, he spikes a fever from time to time, and his breathing is irregular. We haven't seen the normal intolerance to feedings that a child would present with such as bloating, pain with feeding, and vomiting.

 

The hospice social worker and nurse came today and spent a long time here. The nurse agrees that Logan is declining. Joel and I have said we are ready for the next step so she got a hold of the doctor and we now have a plan. We are holding his feedings for the next twenty four hours to see how he responds. We are also weaning down one of his medications. In the meantime the doctor is working with a pharmacist to evaluate how we will handle his seizure medications.

 

We can't just stop his feedings and all medications and only give comfort medications. He is on multiple seizure medications and if we cut them out he would have increased seizures that would cause major discomfort for him. In order to maintain comfort, there is a possibility that Logan will need a PICC line placed in order to infuse a benzodiazepine so that his seizures remain at bay. A PICC line is like an IV that will go in his arm but this line can stay in longer. It is the best way to assure he is comfortable. The rest of his medications can be given in tiny volumes in his feeding tube or rectally. 

 

In the next day or two we will have the final plan in place to allow Logan to be as comfortable as possible as his time draws near. We are now coming to the last leg of the journey. When I went in to say good morning to him today he opened his eyes with the saddest look. He just looks so tired. From here on out things are going to be so hard. I keep saying to myself, "I'm not ready" but I know he is so I have to be too. Joel is staying home from work now. He only had a couple weeks left until school was out for summer. We need to have some tough conversations with Lauren too. She has been asking a lot of questions lately and I almost feel like she sees the changes for Logan and interprets them better than we do. She has also seemed to be spending more time with him and talking about him more.

 

We have no idea how much longer we have with Logan but we will make every moment count. Please pray for us and Logan. We could really use it to continue to lift us up.  

 

The Beginning of Our Journey

Recently more people have heard about Logan's journey. I thought it would be a good time to recap how we got to this place. It may be a couple blog posts because there are six years to recap!

Logan was born at 40 weeks. I had a completely normal pregnancy with him. He was born on a Friday evening and came after just 10 minutes of pushing! He was ready to join the world! He was slow to cry but otherwise his apgar scores were normal. That evening I remember how strong he was. I was holding him to my chest and he was holding his head up and was trying to push off his feet. By the next day he had an episode or two where he would flail his arms out. I had never seen that with our daughter so I called for the nurse. They checked his blood sugar and it was normal.  We blew it off and before we knew it we were home with our handsome boy.

Over the next few weeks feeding Logan was a nightmare. He never latched with breast feeding. We moved quickly to bottle feeding. I remember how fast he would drink and how noisy he was. Then as soon as we sat him up to burp he would vomit almost all of what he drank. Because he would vomit so much he wanted to eat all the time. It was so miserable for all of us. We tried every bottle and nipple size out there to see if we could slow down the flow. We tried so many tricks but nothing worked. His nurse practitioner thought it was reflux and we tried many more treatments. I remember people saying, "He is a boy, boys are slow".

I knew it wasn't normal but hadn't convinced others. Over the first six months of Logan's life he met some milestones but not all as expected. He was definitely behind. By his six month check up I was sitting in the lobby at the clinic filling out a yes/no form about Logan's development. I answered yes to only one question. I cried.

The previous six months were horrible. I had a child that was so hard to feed, inconsolable, not gaining weight, and behind in development. He also had abnormal movements of his body. This kid could never stop moving. Something wasn't right. Plus I was a sleep deprived mom with  newborn and two year old and working part time. This moment at the clinic was a low point for me. It was right in front of me, something was wrong with my child. The Nurse Practitioner agreed and this began, our new normal.

We were thrust into the world of revolving doctor appointments. Constant poking and prodding. Having to retell the story to what felt like a million people. Joel worked full time so I took Logan to appointments by myself. Looking back I wish I had someone with me. There were many appointments with very heavy conversations that I was alone for. It was so scary.

So after the six month check up we saw the feeding clinic team at Children's Hospital. We had already had an appointment with a neurologist and had a CT scan or MRI scheduled. I can't remember which one! The school districts birth to three team was also going to come to do an evaluation of Logan's development to determine the level of services he would need to start helping him get back on track.

At the feeding clinic appointment I did have Joel and I am so thankful for that. When the team started their evaluation they quickly realized Logan needed more physician intervention. They called upstairs to Dr. M's office. He is a developmental pediatrician. He came right down, asked a few questions and did a quick exam and said he wanted to see Logan first thing Monday. I think we were at this appointment on Thursday or Friday. We were freaked out but so thankful the team and that doctor did what they had that day.

So I went alone to the appointment and by the end of it the doctor said he felt something was really wrong and that he was going to test Logan for inborn errors of metabolism. He ordered blood and urine tests and had me go to the lab immediately. He was also interested what the brain scans would show that were scheduled for the end of the week.

Many of the details from here get fuzzy. We saw countless doctors and therapists and I honestly can't remember when everyone entered our lives. Logan was going to feeding therapy three or four times a week. He was also getting occupational and physical therapy. The school district would also come weekly to work with him in our home. We saw a gastroenterologist who began to closely follow his weight and feeding difficulties.

Logan was also having a lot of problems with breathing. If I had been at work (I worked until 11pm in the ER where I am a nurse) and walked into the house and could hear his breathing from upstairs, I knew it was going to be a bad night. Logan sounded like a freight train. He drooled constantly, had a stuffy nose, and his lungs were always congested. He was so miserable and still always hungry! He spent many nights propped up in the boppy pillow.

We started seeing Dr. M. at Children's Genetics clinic. The initial testing for inborn errors of metabolism didn't show anything and his brain scan was normal. That brought us to genetics to dive deeper. Dr. M. was incredible. She and her team were so thorough and really took the time to listen to us. I remember one of the visits she asked me if I had any thoughts on what Logan could be suffering from. I told her about some of my research and she and I had a great conversation. She agreed that some we should test for and we discussed how some didn't really make sense to pursue. I felt that she really respected me and truly heard me. I always came to appointments ready with questions, I did my homework, and kept track of everything. Yes I was neurotic but I had to be. Logan needed me to advocate for him and I was going to do that. After many visits all testing continued to come back normal. It was so frustrating. We were all at a loss and Logan continued to decline. He continued to lose skills and miss milestones and was losing weight.

We were referred to the Mayo clinic to see a specialist in neurology and mitochondrial disorders. The only abnormal blood test we had thus far was elevated lactate levels. This is a byproduct of cellular metabolism in the body. There could be a few reasons for this to be elevated. We trucked it down to Mayo and discussed the next steps in testing for Logan. He would have more blood drawn and have a skin biopsy that day. This doctor was testing for a mitochondrial disorder which ended up coming back negative. She then had the biopsy sent to Baylor College for further testing.

Around Logan's first birthday we finally decided to place a feeding tube. Logan was falling off the growth charts and wasn't doing well. I remember how mad I was that it took that long for the doctor to suggest the feeding tube. We were under the impression that all the work with feeding therapy would help get him on track. Had I known sooner, we would have done it months before. We could have continued his feeding therapy but had the feeding tube to give him the additional calories he needed. I look back on the photos off when he was in the hospital to have the G tube placed and see this little skeleton of a boy. I feel so much guilt that we let it get that bad. Thankfully we had it placed and this was one of the best decisions we made for his quality of life.  

Some time after the feeding tube placement, Logan had his first case of pneumonia. Logan had been having swallow studies while in feeding therapy to assess his ability to swallow. The tests showed that he was aspirating small amounts of his feedings. We used thickener for his formula and worked with his speech therapist to try and train him to swallow properly. Coming down with pneumonia wasn't a good sign but nebulizers and antibiotics turned him around. We continued with supplementing using his G tube. He began having a hard time keeping down the feedings we gave through the tube and by that December he had  GJ tube placed. This allowed us to feed him in a spot at the beginning of the small intestine so he was less likely to throw up. Around this same time he had a third swallow study. On his first swallow study he aspirated a significant amount. They stopped right away and that was the last of him eating by mouth ever. It was too dangerous. His gag reflex and ability to swallow were getting weaker.

That is most of his first year of life. I missed some things but the overall picture was fear of the unknown and worry for the health and well being of our son. Joel and I were completely exhausted and reeling from the constant appointments and tests. We closed out that first year with no answers to why Logan had these problems. This was so hard for me. Why wasn't this a slam dunk. There has to be someone else out there with the same thing. That is one reason I started the blog. The blog has also been a source of therapy and a great way to communicate our journey to friends and family. I will work on another blog later this week to recap how Logan ended up with a tracheostomy.

Thank you again for the continued support. I'm still at home on a leave of absence. Logan has been hanging in there the past month and a half. He sleeps a lot and is having a harder time handling stimuli. He gets tired very easily and is still needing extra pain medications occasionally to help during times of pain/irritability. Lauren has been asking a lot more questions about what the future will be like. She is still handling this remarkably well but is having more worry than ever before.

I can say she enjoys the special attention she and Logan are getting. She loves checking the mailbox! Thank you to all that have sent letters and cards. I have many days when I'm unsure if I made the right decision to be home but when either of the kids have a bad day, I get to be there. I am also here to see all the beautiful moments. I have had time to slow down and take care of myself and listen to the signs that are being sent my direction. We will never get this time back!

Planning

I am currently on a leave of absence from work to be home with Logan. I was trying to keep all the balls in the air with work, home, and school but I was physically suffering. I kept getting sick. Wasn't sleeping. Could hardly get through the day without crying. It was time for me to let something go so that I could focus on family. It was a hard decision to make as we just don't have a timeline on things with Logan. I didn't want to let me co-workers down by leaving but I wasn't being productive and they could all see it. Right now I do know it was the best decision to make.

I have had the opportunity to be home with Logan and more in the loop on his day to day changes. He has more seizures these days and the big ones last longer. He is irritable to stimuli more and more. Some days he sleeps all day and we are lucky if he opens his eyes and other days we can't hardly get him to close them. It is a mind game of hurry up and wait and we are sitting on pins and needles unsure when the next big change will happen. 

In the meantime we have been making plans for the tough days that lie ahead. My mom came last week and we visited with our pastor and met with a funeral home. We have a lot of things to plan but know exactly what we need to have ready. I am starting to delegate out things and people have been great about offering support. We have such great family and friends. 

Planning

Why is life so hard? These past couple of days have been full of emotions for Joel and I. I had a meeting with our hospice social worker on Monday to start the discussion of funeral planning. Yup, we are on that path and it really sucks! It was a hard visit but very necessary. She helped provide resources for planning and also helped me think of things that I would never have thought of. Now it is up to Joel and I to make decisions for when the time comes. The meeting was really meant to be informative and I thought I was prepared to talk about the main to do's. Boy was I wrong. It was like Niagara Falls coming from my eyes! It may sound horrible but it was truly therapeutic and eye opening. 

The one thing about the conversation that was the hardest was toward the end when we talked about where we are at in the journey. Our social worker talked about how the end can feel so far away for so long and then suddenly it is right in front of you. I asked or said (I can't totally remember through the tears) if it is right in front of us. I have always asked our hospice team to be transparent in letting us know when it is time to prepare for next steps. Yesterday the conversation ended with, its time to start having extended family and friends visit. Partially so when the end is near we are not in crisis mode having people come. Instead we can be proactive, allow people the time and allow us to control the influx. Then when it becomes truly time for us to spend the quality and intimate time, we will be able to focus on our family and Logan. Logan has had good days and tougher days lately. We expect that the good times will continue to shorten. Children proceed through the dying process differently than adults and children with neuro degenerative disorders throw even more curve balls. We have no timeline right now but don't want to regret not taking what we are blessed to have and make the best of it. 

Of course I went to work after the meeting. What a bad idea! It ended up being a short day. Thankfully Lauren was off school that day and at a friends so Joel and I met up and talked over a few things. Thanks Ginny! Joel decided to take the day off from work today. Some days are just too hard to hold it together and we need our time to process. Yesterday evening I also had a great visit with friends. My group of gals are the best. I sent a text message in the afternoon in crisis and by that evening was crying and laughing with them. They are an amazing group of women who each live with the normal challenges of parenting and the added challenges of differing children's abilities. We all share a common bond among our children that is unexplained. 

Today wasn't as heavy. I was exhausted but not overcome with emotion. I admit I did come home crabby which is not fair to Joel and Lauren. There seems to be so much to do right now. So much planning and communicating. Joel and I will need to sift through things in the next week or two. As we do, we may reach out to others for help. If you are friends and family and feel the need to see Logan please email me or message on facebook or call. My email is rnzacher@gmail.com. If you know my number or facebook please reach out that way too. We will need to be protective of our time and emotions but also want to ensure we are allowing our support system the opportunity to say goodbye. Please don't take goodbye as an immediate end but a well wish to Logan for his future journey. If you have other ways you would like to reach out with a letter or email that would also be appreciated and we can share it with Logan. 

And for those that worry about our Lauren, we worry too. Tonight she came to me and emptied her school folder. She said she worked all day on something for Logan. It was a beautiful picture with a snowflake. She said that she was scared that Logan will die this year. She said it with a sad but straight face. She then said, "mom I don't want to talk about this at bedtime tonight otherwise I will have bad dreams". I asked her to sit on my lap. She really didn't want to but I made her. I was blunt and said that Logan will die this year and that we are all sad about it. I asked her if she had been hearing us talk about it. She said she had. I told her it is ok to be scared and sad. We do share things when she is present and we express emotions around her. We do censor some things but in the end we feel it is better for her to be somewhat in the know than totally blindsided when the day comes. She was pretty quick to end the conversation but that is how she operates. We take her lead and don't push. She is a smart and intuitive kid. I have no idea where she gets it! 

Thank you for the continued prayers and well wishes. This is such an intense process that is testing our strength every day. Logan is the most incredible human being I know. 

Transition

Ugh, I'm having a hard time figuring out how to start this one. I want to be transparent but don't want to cause worry and pain to others. So if you aren't ready, please don't read this. 

 Things have transitioned with Logan in the last two weeks. We are moving deeper into hospice care and further from our normal day to day management of Logan's needs. He sleeps most of the day. Requires regularly scheduled and as needed pain medications. He is showing symptoms of needing less nutrition and is having periodic shortness of breath. He is also having more difficulty regulating his temperature. We have decreased his feeding volume as his  body is needing less. He is on oxygen many hours of the day as his oxygen saturation levels don't stay above 85%. 

Last week the shortness of breath was becoming more pronounced. It didn't quite make sense as he was not sick. I called his pulmonologists nurse to ask if there were any recommendations they may have to help alleviate the troubles breathing. The voicemail I received in response was kind but was a huge punch in the gut. There is nothing more to do and we were encouraged to continue with our treatments. 

After this call I realized I hadn't yet fully transitioned myself to hospice! I must have been fooling myself thinking there were still things that could be done to keep Logan comfortable and alive. Unfortunately we are now to the point that the things that will help him most are the things that have scared me the most. It is now time to watch him lead us through the next stages. Our response now will change. We will truly begin to aggressively treat his symptoms in a way to create comfort and that may mean to the point where he sleeps all day, has low oxygen levels,  and so on. 

He is going through so many changes at the same time and is not on the normal path of dying. This may be because of his neurodegenerative disorder. We have no one to compare Logan to and have always assumed his journey would be similar to others. Right now it isn't. It's all happening at once and seems to go quickly and then halt to a stop and stay there for days. Torture is my go to word these days.

Our team of nurses and hospice caregivers are working so hard to stay on top of the changes but for me it is simply overwhelming. It is hard to even keep Joel in the loop every time something new happens. I don't know what is part of the normal process and what should cause worry. I am so scared right now. I think I am going to end the post now as the tears are flowing and the pain is just too much. Thank you for all the continued support and prayer. It means so much and often helps carry us through the day. 

How is Logan?

How is Logan?

This is a common question as of late. Hmm, how is he? Some days I wish I knew! Lately his days have been sleepy with periods of wakefulness that are often fussy. He sleeps so much it blows my mind and at times makes me jealous. When he sleeps he is so peaceful. To watch him sleep is like meditation. His body is so still with rhythmic breathing and a face that looks deep into rest. His skin is warm, soft, and so very kissable!

There are days when we only see him open his eyes for a few moments as if he is checking in on us and then saying "ok they are still here". And then other moments of utter discomfort. Seizures are still an issue and they have become longer and more upsetting. Thankfully the frequency hasn't seemed to change just the length. Logan now has morphine as an option for comfort and it has been a true blessing when he needs it. Just something to take off the edge so he can close his heavy eyelids and drift into sleep!

As for the rest of us, well we are all over the place! Lauren is playing hockey and Joel is the assistant coach for her team. The weekends are pretty busy these days! We actually have to plan around a schedule on the weekends! Lauren has had a few moments of deep questions related to Logan but they are often at bedtime and are short lived. We are taking her lead and when she is ready we talk about Logan. Her most recent question was what is going to happen to the nurses when Logan goes to heaven?

As for Joel and I, we are just going day to day. We still have challenges almost weekly and sometimes a few times a week without nursing help. It is mostly in night shift which really challenges us. We are trying to maintain our jobs as income is important. We have great support from our jobs but there is worry that if we take too much time off now, we won't have it for when we really need it. Our nurses are truly amazing, we just need more of them!

As for when we really need to take time to be home, that is a whole different bucket of worms. We have no idea what to expect next. We live day to day planning on our normal routine until someone tells us otherwise! We do have moments when in our hearts we know there is a change for Logan but beyond that it is hard to process what the change means. This is where hospice is so valuable. They will help guide us through this journey and will steer is in the right direction if we are off course.

So here we are in this place of uncertainty. What we do know is that Logan is getting everything he needs. He has a team that will do almost anything for him. As for the rest of the family, we will continue to work through our worries, frustrations, and fears knowing that some day Logan will be in a place of comfort and peace. Please share in prayer with us as we continue this journey with our dear Logan and Lauren. They are truly amazing children that blow us away every day. Joel and I hit the jackpot with these two!

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. 

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.

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.

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. 

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.

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!

Seizures and more seizures!

Hello blog world! I'm back at least for this post. Hahaha! It's not easy to find the time these days. Life is so hectic and filled with so many activities. 

Some of you may be wondering how Mr. Logan is doing. Well we are happy to report that the less than exciting flu season has benefited him. Logan has stayed away from most of the big and bad germs. The only issue we have had is the cold weather preventing him from going to school and the occasional night of needing oxygen into the morning. 

Logan continues in his last year of preschool. Next year he will be on to kindergarten in the mainstream school. He and Lauren will be at school together. Fun for her, not for me! I'm freaking out. More germs, more stimuli, and more unknowns. I'm sure it will be fine but it still scares me. We are going to start him slow and see if we can increase his hours and number of days per week. Right now he doesn't have the best stamina and all day every day kindergarten may be too much. We will see.

So now for the reason I am blogging tonight. I mean, come on let's not act suprised...lately I only blog when something is really bothering me.

We are currently experiencing some more changes with Logan that may indicate progression of his disease. Despite multiple medications for seizures and regular increases of those medications over many months he still continues to have problems. His tonic clonic seizures which are short but very vigorous are beginning to cluster together and increase in frequency. He is also experiencing irregular shaking of his legs sort of like a rabbit thumping. 

I am having difficulty communicating my concerns to his seizure doctor. I have to talked to the triage nurses to send him messages and I don't feel they are telling him all of my concerns. Logan has been on two seizure medications for many many months. We check blood work regularly to find out if these medications are at a therapeutic level in his body. Every time we find out they are not and then have to work to slowly increase one or both.

At our last appointment, I was under the impression that if things had not improved, we would move to a new medication. Nope, we are told to increase one of his medications and check back.

Well, guess what? Why would I want to continue a medication that is doing nothing while his symptoms,worsen. It doesn't make sense to me. I know we should try and exhaust all options before changing but come on, this child is miserable. 

I don't understand why they won't listen to me and all I want is to talk to the doctor. I have a feeling they are only presenting his lab results and asking for a medication increase. If I was to talk to him, I could remind him of our plan at the last appointment. Ugh, advocating is hard. I just want to scream at the nurses. I can't stand when people try to pretend they know what is right for my child. I'm not dumb. I'm a nurse too and I'm his mom. I know what is normal and what is not. When someone makes assumptions for me I get very frustrated. If I feel I am listened to and it is a collaborative effort, I am much more likely to jump on the band wagon. I expect more from those in my profession. Please listen. And I mean really listen. Seek to understand, don't ever assume! 

So for now I try to remain patient despite the agony Logan experiences with every large seizure. It's not fair and he deserves better quality of life. On another front, we saw the opthomologist today. We see them every once in a while to watch the severity if his eye drifting and to see any other signs and symptoms 

There was a scribe in the room to take notes during the exam. The Doctor was going through his exam out loud and then became quiet while he looked over Logan. I immediately had a pit in my stomach. Logan sleeps with his eyes slightly open and doesn't blink enough during the day so we put in eye drops as needed. Well apparently the open eye sleeping has actually caused inflammation of some of the blood vessels of Logan's cornea. Oops, but treatable. We are being more aggressive and putting in ointment while he sleeps and drops in between. The swelling should go away with time.

New finding number two, Logan has a very small "non specific change" in the center of his vision that can be seen on exam of the back of his eye. It equates to him having some small amount of distortion in the very center of his vision. This change isn't the end of the world but unfortunately it is the first time we have found Logan to have a degenerative change in his eyes. It sucks to hear. Every time there is a change with Logan it is painful to know he has one more thing not going as it should.

(So I wrote this post last week and didn't publish it so here is the follow up)

Since last week I have made some headway with Logan's neurologist. I sent an email through the patient online portal requesting another call to discuss Logan's seizures. I was still worried, frustrated, and stewing after the response I got from the week before. The triage nurse called me back. I told her again what I had told her and another triage nurse the week before. This time I started to cry. I had had enough and my emotions got the best of me! 

I could tell she knew I was upset. She asked some more questions and said she would connect with Logan's Doctor. I think she understood during this conversation how upset I was. She asked when a good time for her to call call was. I told her I had some meetings at work and then would be working in the ER for a few hours that evening. I finally told her I was a nurse. She made a comment about how I must really know what it is like and she seemed to really change her tune.

Next thing I know, I receive a call back that they want to admit Logan to the hospital for seizure monitoring. This is what I thought to be an overnight stay but found out it will be a few days. They will be able to monitor his seizures and get better information to be able to come up with a new medication regimine.

Now back to my conversation with the nurse. I was quite upset that me finally saying I am a nurse seemed to change the urgency of the situation. I hate to think that other parents with no medical background aren't taken as seriously. I see this happen and experience this more than I would like to. I wish health care professionals would understand that the patient and or parents do know the most about the situation. Yes, I know people get jaded and make assumptions based on encounters with other patients where maybe this trust was violated but I hope that is the minority. 

It is hard enough dealing with staffing of home care nurses, worrying if someone is going to call in sick or quit, worrying that Logan will get sick and land in the hospital, worrying about remembering appointments and returning phone calls. It would take a lot of stress off if in situations like this, I was heard the first time and action was taken to help us through our already challenging lives as parents. Logan deserves the best and I want a team of people that are on his side to do that.

So tomorrow we go in for seizure monitoring. I will be waiting in the morning for our arrival time as that unit was full tonight and they don't want us to come to the hospital until they discharge someone and have a room ready. The nurse manager was the one to call and she was so apologetic. I was very appreciative of her call so we could change our arrangements for transportation. I hope we obtain good information about his seizures to better help his doctors treat them. It is heart breaking to watch them. Any relief would be a blessing. 

So wish us good luck! I'm sure he is going to be so mad at me when they goober up his head with electrodes and wires! He always gives me stink eye when he is mad! That's ok, I will be there with him to help endure the torture. I haven't had enough one on one time with him lately so we will have lots of cuddles, read books, watch movies, and give the staff a few laughs while we are there. I will update when I have some results or a plan of action. 

On a side note, I don't mean to point fingers at an individual nurse. I know she was doing the best with the information she had. This is a problem we encounter across the whole healthcare system. More work needs to be done to help health care professionals understand that they may have expertise in their field, but they can't be experts at knowing what each individual needs. Collaboration is key!! I hope I am at least translating my experiences to a more positive experience at the bedside for my patients. 

Questionnaire

I'm filling out some school paperwork tonight. There are a lot of questions about Logan's development. It's always hard to fill these out. There are so many questions that we answer no or not applicable to. When it comes to the medications and hospitalizations section I always write...more than we can count and then provide a little bit of elaboration on what he is on medications for and what types of surgeries or hospitalizations he has had.

When questions are asked about when he talked, walked, held toys, etc. my heart breaks. Logan learned to coo and roll over in the first year of his life but after that, these skills were lost. He was able to hold his head up and put some weight on his legs at times as an infant. I have pictures of him in the baby saucer holding his head up and him on his tummy pushing up off his arms with his head up.

Over time, skills he did gain are now gone. Where are we now? Logan still loves to be cuddled. It is my favorite activity with him. I hold him and press my cheek against his and he calms and closes his eyes. He loves to be sung to. He will sit and watch whoever sings as he listens calmly to the music. He loves to watch his sister Lauren (7 years old) play. He cannot participate but when she plays where he can see her and talks to him throughout, he watches on. She reads to him and also plays make believe with him. It melts my heart to see how tender and loving she is with him. She truly shows unconditional love despite the jealousy that occurs at times!!

Back to the questionnaire, this is not the first I have ever filled out. I can't tell you how many I have filled out and often the questions are the same. I find I am getting more sarcastic in my answers with each questionnaire. I don't mean to. I think it is a form of coping with the reality we are faced with. We have a son that requires help with all daily cares. He cannot move himself, he cannot tells us what he needs, and cannot tell us what is bothering him. He can't say, "I hate this movie, why do you always put it on for me"! I really hope we aren't torturing him. We work really hard to watch his non verbal behaviors to figure out what he likes or dislikes.

As for the rest of his health, Logan is still doing really well. He still has yet to be hospitalized for an illness in three years. We are able to keep him home and weather the storm here. I still knock on wood regularly as we are so lucky to have a great staff of nurses to help manage every illness that comes Logan's way.

We saw the seizure specialist this week. We are continuing to increase his seizure medications as we have done for many months. There is still room to increase the doses based on his weight but we must watch his lab work closely to ensure there are no detrimental effects and also watch for side effects. If these most recent dose increases don't work, we have two more options of medications. Logan continues to have at least six tonic clonic, otherwise known as grand mal seizures per day. He also has many other small seizures that are less prominent and debilitating but still concerning. We still continue to work to eliminate seizures but always know that this may be a battle we chase and don't completely win. If anything, we just want them to lessen and remain short. That way Logan experiences less distress and comfort. If we can eliminate them, I would probably stand from the roof tops and sing!!!

Medical marijuana is not an option at this time. It is legalized for epilepsy in Minnesota and we would be able to have Logan certified to receive it but unfortunately the cost is just too high. We spend a large sum of money per month paying a parental fee for his medical assistance in addition to the monthly fee that comes out of my check for private insurance. The cost of medical marijuana is just too far out of reach for our budget. It is not proven that this option would work, but it would be nice if it was affordable enough for us to try it!

So for now, we continue to support Logan's comfort. He goes to preschool as much as possible. We do the best we can getting him out and about to activities. We are excited for breakfast with Santa! We are working on getting approval from our county to have some remodeling done to his room and bathroom to assist in accommodating his increasing weight! He is 52lbs and its not getting any easier to lift him these days. We are coming up on Thanksgiving and I almost feel ashamed to complain as much as I have in this post.

I am truly thankful for so many things in my life. I am healthy after recent gallbladder removal. My children are well cared for and otherwise healthy. They are thriving and teaching me new things constantly. They make me a better mother every day by teaching me patience, unconditional love, and gratitude. My career is going very well and I feel very fulfilled in what I do outside of the home so many days of the week. My husband has a great job and comes home excited to talk about the great day he had. He supports me in all I do and listens to my rants. He does a much better job than I do at keeping the house in order, disciplining and teaching our 7 year old, and keeping our family fed. This Thanksgiving holiday will be spent with friends and family enjoying all we have to be thankful for. And for Logan, we will continue to cherish each and every moment and do everything in our power to keep him comfortable and thriving. This, we are so thankful for each and every day!

Happiness

Hello!!!!

What a great summer it has been. We are very fortunate for the wonderful summer Minnesota has given us! Logan has spent some quality time outdoors! I always wish for more but Mosquitos can be a hindrance. They really love to bite his face. Last week he had a bite under his eye and on his forehead. No big deal but he can't itch them! We are so thankful for Benadryl cream!

Well I have fun things to report and I know this is rare. Most of the time it is a depressing doctors appointment or change in symptoms. Not this time!

Last week we had some great Logan moments. I came home from work one evening and he was in bed. I went in and gave him a hug. It isn't your usual hug. I have to take his arm and wrap it around my neck. But once I do he relaxes, closes his eyes and slows his breathing. All is right with the world in those moments. 

So that is what I did and then I sat with him trying to relax him for bedtime. Lately he has been a night owl because of his medication regimen . Nine pm is prime awake time! So I was in his room, did the hug/cuddle routine and said goodnight. As I pulled my arm away to leave the room he opened one eye and looked at me. I knew he was scoping me out hoping I would stay to cuddle longer. So I did and this happened about three more times until I figured him out. Finally I didn't say good night but slipped away and he stayed sound asleep!

My heart melted knowing he was aware of me being there. I felt so significant to him in that moment. It can be hard to find those connections with him at times. 

Tonight is a good example. I came home from work and went straight to him to say hello. No matter what I did he just wanted to watch toy story. I have to chalk that up to being a four year old almost five year old. He isn't always going to want to be involved with me and I have to be ok with that.

Oh what a mommy bummer!!!!

Otherwise life is pretty good. His seizure status really hasn't improved. He has had a couple of big seizures in his wheelchair in the past week which is abnormal. We pray for control of them soon. He is staying healthy, knock on wood. The plan is to put him back in school but to hold him back in the class he was in last year. Three days a week with his same amazing teacher seems much more do able than a longer day with a new set up. I wish it was different but we need to understand his stamina is not what it used to be. I love spending this time of year getting him and Lauren ready for school.

She is beyond ready to start first grade. She is chomping at the bit to see her friends and be given a challenge. I have been so extremely proud of her with Logan. The other night it was me, her, and Logan. We didn't have a nurse. She jumped in and suctioned him a handful of times. 

I never ask her to help with his cares. I don't want her to feel obligated. She was so sweet to jump in and help and when it was time for bed, she asked if they could have a sleepover in his bed. My heart melted again! I'm so grateful for them both. I'm the luckiest mom ever! 

New neurologist

Today Logan saw a new neurologist at the request of his current neurologist. He sent us there for a second opinion regarding Logan's seizures. We started the day with an EEG (test that monitors brain activity). Of course Logan didn't have any seizures during that time. Go figure! It still showed abnormalities that have been noted previously and this neurologist basically said, he has an irritable brain. 

We spent a good amount of time with the doctor and his nurse. It cracked me up when she walked in with a thick stack of medical records for Logan. We joked about how much time it took them to read it all! I have to say though, I was so impressed when the doctor started talking with us, it felt as though he knew all about Logan before meeting him. It meant a lot to know they cared enough to do the leg work before our interaction. We didn't have to rehash all of his medical history. 

The goal of this appointment was to see what other options we may have to get Logan's seizures under control. The first plan he made is to increase one of the medications he is already on. We are still at a lower dose and we think this one gave some positive benefit when we started it. If that doesn't work there are many more options. He may recommend we bring Logan in for an overnight stay in the hospital to monitor seizures. He thinks it would help us capture seizures on an EEG and help him better understand what to treat. 

We also have many more medication options and he has a specific one in mind that he may move toward. We also discussed medical cannibus. This is now legal in the state of Minnesota and in the past week became available for people with certain conditions such as epilepsy. I have to say I was embarrassed to ask. It seems like such a controversial topic. We had a great discussion around the option and may go with it in the future. With that being said, we would continue his current regimine of meds and use the medical cannibus as an adjunct. More to come on that topic. 

I left the appointment feeling hopeful that we have a renewed chance at lessening Logan's seizures and giving him a better quality of life. After most of these appointments I feel drained, defeated, and worried. Not today! We don't have a magical fix but we have a team of people that will give us a fighting chance at doing the best for Logan and that feels great!