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.