Wednesday, July 2, 2014

Seizures

Since I last updated, Logan has seen his neurologist. He thinks Logan's seizure medication (Keppra) may have been causing agitation. Over the past couple of months we have been trying to treat his severe agitation. We started new medications and finally found a regimine that worked. It did make him sleepy but comfortable. His neurologist now has started having us taper off of Keppra and change to a new seizure medication (phenobarbital). We are on step two of the taper and have had the new med on board for at least two weeks. In the last three days he has had one big seizure a day. They are short lived but are increasing in frequency. We seemed to have good control for the past month. I have heard the time during a seizure medication change is hard and that more breakthrough seizures may occur. Hopefully they stay at the degree they are at right now and no more.

Otherwise Logan is doing great. I was the night nurse last weekend when he started down the path of illness. He had a fever and low oxygen levels. After starting his as needed medications he turned around quickly. Thank goodness. Tonight I am the night nurse again. We have some holes in the schedule for various reasons which is always stressful. It is hard to work all day, commute, and then have to stay up all night. I do have to say I enjoy the one on one time with him. It seems I have less and less of that these days. 

I'm praying he rests well tonight. He had a seizure a half hour ago and is pretty zonked now! I have to say, I LOOOOVE his bed. It is a hospital bed with side rails like a crib but no slats, just big panels. We can adjust him into all sorts of positions. When we put him into bed at night, he just melts. I also didn't realize how I would feel when we were able to let him sleep with a pillow. It helped bring some normalcy to his bed. Plus I feel better knowing he has a cushy place to land his head. 

Wish me luck tonight! I'm not the best night shift nurse but I am a pretty good mommy! I let Lauren watch Frozen tonight. I was in Logan's room giving some meds and she started to belt out the song "let it go". He woke up and looked around. The look on his face was priceless, a little confusion, curiosity, and maybe fear. It was hard to tell. I'm sure he is sick of being tortured with the songs! 

Now off to start the midnight feeding! Happy 4th of July to everyone. Stay safe out there and enjoy the holiday!

Rachel

P.S. Here are some photos from Fourth of July last year



Tuesday, June 24, 2014

Fun in the sun!

Lauren, Logan, nurse Cora and I had a great Monday this week. We went for a quick appointment to the nurse practitioner to have a rash/eye redness looked at and decided to then go for pizza, the splash pad, and ice cream. The weather was perfect and Logan enjoyed splashing in the water with Lauren. Lauren soaked Cora and Logan at one point and the laughter of us all felt great. It was such a blast to involve Logan. Lauren seemed to really enjoy the time with her brother. We ended the outing with strawberry ice cream for Logan and I and mint chocolate chip for Lauren. Logan may not be able to eat by mouth but we do sneak him tastes of his favorite ice cream flavor every once in a while! Happy Summer everyone!













Tuesday, June 17, 2014

Life is good

Hello! 

Well things have stabilized in our household. My last post was packed with emotion. We are through the crisis phase and are moving on.

Logan had been having severe bouts of agitation causing him to be inconsolable and to bite his tongue and mouth constantly. His doctors tweaked his medications a few times and we seem to be in a good spot. Logan has more good days than bad which is a definite step in the right direction. Comfort is key.

He sleeps more which is a side effect of the medications but I would take that any day over the agony he was in. He is going to a couple weeks of summer school and today was the first day. We are so lucky to have such awesome teachers and therapists. Regardless of barriers made by his disability, the school team works to include him in everything. 

Logan sees his neurologist this week for a check up. Otherwise I can't complain! 




Wednesday, May 28, 2014

Black Hole



I feel as though I have fallen into a black hole of sadness. Things just aren't right with Logan. He is so very agitated every day and almost all day. Even when sleeping he isn't resting well. These past few days have brought many concerns to light. We don't talk a lot about it, but we know things are getting worse for Logan. For those of you who don't know, Logan has a neurodegenerative disorder. His condition has most likely worsened since December when he started having seizures. In the past couple of weeks, we think he has had more progression. 

It is heart wrenching to see him going through this. He seems miserable and we are miserable and exhausted. It is so difficult to console him and at times is impossible. We are just about at our wits end and have run out of ideas. 

So today we went back to the palliative care clinic. We have a new regimine of medication to start trying including clonidine, atropine drops to dry up oral secretions, and we are increasing his gabapentin dose twice as fast as was originally planned. This is only the first plan and there are many more options we can pursue as we find what does or does not work for him. 

Tonight it just can't seem to work fast enough. As I lay here in bed I can hear his monitor going off constantly due to a high heart rate and the suction machine seems to go non-stop. Thank god for our nurses because I would have lost it a long time ago without them. 

I pray that with the help of medications Logan can get back to himself. I am so scared that we may not get back the Logan we once knew as we continue to have to medicate him for comfort. If that is the case I will really be kicking myself. I feel like we haven't taken enough time to make special memories with him. Don't get me wrong, we have made memories but it feels like there are so many things we have missed doing as it is easier to stay home. He isn't even baptized. 

It is so easy to let the day to day tasks get in the way of pursuing things that matter most. Time just gets away and before you know it, it's too late. I don't know how to get past these feelings and start doing meaningful things. It is hard enough to keep up with the necessary tasks when all I want to do is sit and do nothing. 

As I am writing this post, feelings are pouring through. I try to not let them surface very often. It is painful to feel this way. I know we will get through this temporary black hole but what happens next is scary to contemplate. We are living through a disease process that is slowly taking our child from us. Some day it will take him away forever. It makes me so angry to think of what will come. I think I am going to end here as exhaustion is setting in. As always, thank you for all the support, prayers, and well wishes. We could, use some extra energy sent our way!