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.
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