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.