Thursday, April 14, 2016

Frustration

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

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

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

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

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

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


Sunday, March 13, 2016

Code Status



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

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

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

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

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

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

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

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

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

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

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

Thursday, February 11, 2016

Grief

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

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

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

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

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

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

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

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

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

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

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

Thursday, January 28, 2016

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.