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. 



Thursday, November 19, 2015

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!

Tuesday, August 11, 2015

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!