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! 

Sunday, May 25, 2014

Agitation

Well, it's been a rough week for Logan. He has been agitated every day, almost all day. He fusses, bites his tongue, writhes, seizes, and more. At times he is inconsolable even for me. I am the one who can always calm him and my tricks aren't working.

I have cried a lot this week. My gut says something is wrong. 

I don't think it is illness, an ear infection, etc. I think we are embarking on a new normal. He saw the nurse practitioner and she witnessed first hand his agitation. She feels his issues are neurological and she has known Logan from infancy, I trust her judgements.

I work evening shift but have been home in the evening a lot this week. Every night I come in the door, hug Lauren, ask her about her day and then check on Logan. I often cuddle him and ask him about his day. Sometimes he is calm and watches me speak. Other times he is upset, biting his lips/tongue until he bleeds.

I played phone tag with the Palliative Care Nurse toward the end of the week. We finally connected on Friday. She said the doctor wants to see Logan next week. I told her that would be fine but that we really needed something to help with the agitation before next week. She was able to contact the physician and we now have gabapentin.

This medication is to help treat neuropathic pain. The palliative care physician feels that Logan's neurodegenerative condition can produce neuropathic pain. So far we are seeing an improvement in his symptoms. He has less agitation and is sleeping better. I am so glad we were able to get this medication started. I was afraid he wouldn't have a tongue left after all the biting he has been doing.

On a positive note, we met with the Make a Wish Team. We have decided not to ask for a trip to Disney World like we originally planned. Logan just does not seem in a good place to travel and we don't think it will get any better. So instead we are going to have a big party for him. We threw out a lot of ideas and really want it to be Logan friendly as most normal kids activities are not accessible for him.

We asked if the wish could be granted in the next few months and they think it is doable. We are hoping to have as many family and friends present to celebrate Logan. I will sent updates as soon as I have the date. We are really excited to have this opportunity. What a blessing!








Sunday, May 18, 2014

Metabolics

Last week we continued our search for answers to Logan's medical perplexities. We saw a metabolic specialist last Friday. It was an interesting appointment. This was a new doctor to us as well as to the clinic. We have been waiting for him to arrive as there was not previously such a specialist at our genetics clinic. 

He went through the usual history and physical. Nothing new to us. During the visit, it was a little awkward. I could tell he was new and still trying to find his away around the exam room. It felt like Logan was his first patient at the clinic! He seems very intelligent and I could tell he was really listening to our story and truly did a detailed exam. After that he discussed the next step. He has a few diseases in mind that he would like to test Logan for. He also wants to talk with Logan's neurologist to discuss Logan's neurotransmitters. He had testing done (I think it was a spinal tap? It was a long time ago!). One of them was low and this doctor wants to look at it further to see if there is a therapy that could help increase the level. I'm not sure how this does or does not affect Logan. It is not one of the common neurotransmitters like dopamine. We will see what he comes up with. 

The doctor also wants to look closer at his MRI. I also mentioned my niece who had strikingly similar symptoms as Logan. He was interested in this medical history. After that part of the discussion, he mentioned the National Institutes of Health. He asked if we knew of their undiagnosed disease clinic. Of course I did, I've looked at there website a million times. This is a program that takes patients with undiagnosed conditions, brings them to the NIH in Maryland, if they qualify, and work with many specialists to find a diagnosis. Google the clinic and you will find a better summary than I am providing. 

He mentioned that he used to work at the NIH and that he would be happy to submit a request for Logan to go to the clinic if we cannot come up with answers. I have a feeling my jaw was on the floor at that moment. 

I was suddenly a fan of this doctor! He did not have all the answers at that moment but seemed genuinely interested in helping us find answers. He never made us feel like we were on a futile mission. He never questioned our intentions. He understood our journey for answers goes beyond Logan and into the future generations of our family. I will update the blog as I have news on this front. We will start testing in June. 

Below is a picture of Logan and his cousin Marissa. She graduates from high school this week. Marissa has always been so kind and loving to Logan. She has such a big heart! We know she will accomplish great things someday! Logan won't be able to make it to the grad party but Lauren and I will be there to represent. 

And lastly, a shout out to my niece Taylor...Congrats on making the cheer squad! You go girl!