Monday, March 2, 2015

Maple Maze

Today we had a day off from school. It was warm enough to venture out so Logan, Lauren, Cora, and I went to the Maple Maze. It's at the community center and is a big indoor jungle gym. Of course Lauren was in heaven from the start! We scoped out the place to see what Logan could do. At first it wasn't very promising but then we figured out how to make it work for him. 

He and I sat on a purple dinosaur for a while. He sat there and watched all the kids around him. Then he hung out with a crocodile and we found a fun spinning wheel. It was just enough for him. The other bonus, despite it being loud and busy, he was calm and had zero seizures. He also had a groupie named Charlotte! She was so interested in him and followed around Lauren and played with her. All in all it was a good day!

Wednesday, February 25, 2015

What's going on

I had a pit in my stomach feeling when I got home tonight. Something just isn't right with Logan. Nothing acute, it feels like the occasional decline in function or loss of skills. Logan has had a really tough time with seizures. They just aren't under control and seem to be worse. With all the med changes it is hard to decipher what is worrisome versus a medication side effect. 

Logan has had a slow heart rate intermittently while sleeping at night. This isn't a big deal as he does not drop his rate low enough to need intervention. What is worrisome is that he does it and drops his oxygen saturation. His nurses do everything they can to get his sats up without oxygen but end up needing it as stimulation and position changes do nothing. He is virtually unresponsive. I have tried my mean nurse tricks to try and get him to wake up with little success. 

I have listened to nurse after nurse voice their concerns and uneasiness with his status. We have a new seizure medication change but that does not relieve the teams worries. I have a call out to palliative care and they want to see Logan.

I hope to hear that he is being overmedicated, but am scared that that is not the case. I pray that we are not seeing a decline in function. I worry that his brain degeneration will at some point mess with his ability to perform daily protective functions. He has already lost the ability to protect his airway thus the trach. I don't want him to lose the drive to deep breathe and oxygenate.

I am a nurse so you would think I know what the next steps in our journey entail but I don't. I have no idea what to expect next. I go off of my gut instinct as a mother and wait to see if his testing and or doctors opinions validate this. It is rare that I completely miss the mark. I hope my mommy warrior gut is wrong right now. He has been doing so well at school and has been so healthy. I pray right now is just a side effect of med changes and seizures and nothing else.

Logan is such a warrior and amazing human being. He never seems phased by the changes. His mom on the other hand is a little worried! Thank you to those who continue to pray and support! It means so much especially during those times of worry and helplessness. 

Tuesday, January 6, 2015

MRI Results

The MRI results are back. Logan continues to have mild atrophy of the brain. That means his brain continues to shrink. We have been told he has this on previous MRI's. This time they noted that the atrophy has mildly progressed from where it was two years ago. Basically it gives us a reason for Logan to be less interactive, have less movements, and more seizures. 

I am not suprised by these results. I have to let out a little sigh of relief that we didn't hear some major news. This is more like what is expected of Logan's course but I always worry about worse case scenario. Thankfully we were given news that is easier to swallow. 

So we continue on as is. The changes in his seizure medication dose has not made a difference. We are to call next week with an update to his neurologist and may have to change medications at that point. I just want the seizures to be better controlled. It has got to be miserable for Logan. 

I have also tried to connect with the metabolic specialist that saw Logan many many months ago. He was sending off a letter to the NIH to see if they had any ideas about Logan. I called again today looking for an update. Hoping to hear back tomorrow. I am having difficulty getting this doctor to keep me updated. 

...I wrote this blog a couple days ago and hadn't had a chance to send it. Now I feel like saying, "what the hell?" Seriously, I read the post and feel like I am totally sugar coating something that is a big deal. It is a big deal that Logan's brain continues to shrink. That's not normal! I'm trying to play it down so it doesn't bother me so much. It does bother me but this time it doesn't feel as devastating, more frustrating than anything.

I am frustrated because we still do not have a defined diagnosis for Logan. Nothing to say, here is the name and this is what to expect in the future. Instead we are presented a black hole that we are sent down with no end in site. 

I did talk to the metabolic doctor today. He has not heard back from the National Institues of Health. He will try one more time but does not feel optimistic. This time he is going to send all of Logan's records with. During this conversation I finally heard that we may have a diagnosis but can't land on it definitively because there are so few cases. Logan and I (if I remember correctly) have a genetic mutuation that has been found in only a few cases. Because it is so few, the doctor's can't say this is what is causing his symptoms. Those that have this mutation have some similariities to Logan but not as severe and there are some big differences in the cases. 

Well at least the doctor is being open about this and not dancing around it. I finally feel like I am being given some sort of an answer. I have to admit though that it is hard to trust. Logan has been seen by so many people, all with different ideas. My hope would be that the NIH might find his case interesting enough to take a peek at. Maybe there is a doctor in the US that is studying this. I wish I had a magic wand to find out. Ugh!

Other than that, we are in a deep freeze here in Minnesota. Hello WINTER! Logan has been cooped up all week as it is too cold to go out. Poor guy. You should see his hair. It needs a cut desperately. He looks like he fell out of an airplane (as Joel's family would say)! Hopefully warmer weather comes our way and he can get back to school and maybe head to great clips for some boy-scaping! 

Sunday, January 4, 2015

Christmas Wrap Up and Happy New Year

Here are a few photos from our low key Christmas Eve and Christmas Day plus the photo from visiting Santa. As of today, all family Christmas celebrations are complete. We spent the holidays with friends and family and had many different celebrations. We are so lucky everyone comes to us to visit. It is just too hard to take Logan out of town. 

Logan had an EEG, MRI, and blood work the week of Christmas. We have results on the EEG and blood work. I hope to hear about the MRI this week. The EEG shows he is having generalized seizures in addition to the tonic-clonic seizures he already has. The generalized seizures are firing from both sides of the brain. We have increased one of his medications. If that doesn't help, we will switch to a new medication. 

The blood work was all normal. They checked his liver, thyroid, ,blood counts, electrolytes and more. So glad to hear everything else is working as it should. I am beyond anxious to hear about the MRI. It is so hard waiting. I will update when I get the results. 

As for 2014... another great year in the books. Logan stayed out of the hospital and out of trouble! He continues to enjoy preschool. This year he stays awake for most of class. He is less interactive but this may be due to medications or the constant seizures he has been having. We had Logan's Make a Wish party last summer. We had such a blast at the party and enjoyed the many friends and family that came from afar. Thanks to Aunt Theresa and the Girls and Uncle Mike and Aunt Jane for coming from such great distances. We look forward to 2015 being another year of thanks for Logan's health and happiness. For all he overcomes day in and day out, he remains a rock star. I can't wait for each and every cuddle session with him this year and to see what new adventures we will come across. 

As for Miss Lauren, she started Kindergarten last fall and loves school. She is a great student. I hope I can say that when she is older too! She is totally into Frozen right now. What a suprise! She completed two levels of swimming and wants to start dance classes. She had a great summer hanging out with her dad and neighborhood friends. Joel took some time off from work for about eight months. He now works at a school as a cook. He has an amazing schedule that works well with our hectic lives. He is the glue that keeps our family together these days. He keeps Lauren in line, makes sure we are fed, and keeps things up around the house. I don't know what I would do without him. Plus he has an amazing work schedule with holiday's, school days, and summer's off. We are so blessed to have the ability to have jobs that work so well with our lives. I continue to work in the Emergency Department as a Supervisor. I love what I do each and every day. The challenges keep me on my toes and the people I work with are THE BEST! 

We have welcomed the new year and are quickly approaching a difficult Anniversary to celebrate. Joel's sister Leah passed away last year January 6th. We miss her so very much. Every family gathering, every holiday, and every milestone come with feeling as though there is something missing. I know Leah is always there with us and looks over all of us but it's so hard not to hear her laugh, see her new haircuts, what makeup she bought at Sephora, and watch her be an amazing mother to Taylor. We are so proud of Taylor and we know that Leah is guiding her every step of the way. Taylor has taken so many changes to her life in stride. She is doing great in school, continues with cheerleading, and continues to enjoy hobbies she and her mother shared. Taylor has her drivers license which brings new independance. It is weird to think she is driving and will soon be graduating from high school. When I joined the Zacher clan, Taylor was in elementary school. Time flies way to fast! 

Welcome 2015! I am excited to see what adventures we will come across. Praying for good health of all familly and friends, strength through good and bad, and lot and lots of laughs and hugs! 

All the best to you and yours,