On to his next journey

Our dear Logan Michael passed away peacefully this morning May 27th at 12:20am. Joel, Lauren, myself and his grandparents were here to see him off on his next journey to heaven. Logan has left his mark on this world and will now be with loved ones awaiting him in heaven. He is now free and we are comforted knowing he will no longer be in pain. Our Bubba will be sorely missed but we know he is smiling down on us!!

Rough Evening

This evening Logan had a tough time. He has had a good couple of days of comfort and was mostly seizure free. Today he seemed quite alert and as the afternoon and evening went on his alertness turned to agitation. The seizures worsened and he required many extra doses of the versed drip. Our nurse had to call hospice as he exceeded the number of doses of versed that they would have wanted him to receive. Thankfully the doctor was contacted and the increased dose was ordered. The hospice nurse came and changed the dose and now he is very sedated. His oxygen level is pretty low right now but he is peaceful so we are going to let the medication clear his system a little bit. He's what we called "snowed"!

Today we changed his versed drip to a lower volume of fluid but the same dose. He was still on enough milliliters of fluid that it could sustain a person longer. We would love for him to live longer for our sakes but it is not fair for him. The change in volume will allow his body to rest as he continues his journey on earth. We know this change means things will begin to progress. My gut says we will see many changes this weekend. We saw more than I expected tonight but I trust that he is getting exactly what he needs to feel pain free. Logan does everything in his own time and his own way. He carves a unique path that you can't predict. We will continue to surround him with love as the days carry on knowing the next path for him will be full of light, joy, and freedom.

Goodbyes

This weekend we had many visitors. My sister, her fiancée and my niece and nephew came for the weekend and they left today. My grandma was also in town and was able to see Logan too. It was so hard to see them say goodbye to Logan. All I could think was that they are probably saying goodbye to Logan for the last time. I lost it. My heart was breaking. 

I'm going to miss Logan so much and I know so many other people will too. He's not just my son, he is brother, nephew, grandson, great-grandson, friend, and so much more. He is loved by so many. As people come in and out of our house so many memories are shared, tears are shed, and most of all love surrounds us all. 

It's like Logan is in this bubble of peace right now. He is resting so well. It is rare to see him awake. He still looks as handsome as ever with his soft skin, long lashes, and wild brown hair! When I hold him he feels thinner but when I nestle him in to my cheek it is still my bubba boy there. Somehow amidst all he is going through he can still comfort me. Soon he will be in heaven doing all the things we so wished for him on earth. 

Things are changing for Logan. His little body is telling us he is tired. Logan had a decrease in his feedings a couple weeks ago as his body was getting overloaded with all the fluid. In the last few days he has been giving us more signals that his body is needing less and less. Because Logan has a neurodegenerative disorder and because Logan likes to be unique, a lot of his symptoms aren't classic! These last couple of days his heart rate has been high, he spikes a fever from time to time, and his breathing is irregular. We haven't seen the normal intolerance to feedings that a child would present with such as bloating, pain with feeding, and vomiting.

 

The hospice social worker and nurse came today and spent a long time here. The nurse agrees that Logan is declining. Joel and I have said we are ready for the next step so she got a hold of the doctor and we now have a plan. We are holding his feedings for the next twenty four hours to see how he responds. We are also weaning down one of his medications. In the meantime the doctor is working with a pharmacist to evaluate how we will handle his seizure medications.

 

We can't just stop his feedings and all medications and only give comfort medications. He is on multiple seizure medications and if we cut them out he would have increased seizures that would cause major discomfort for him. In order to maintain comfort, there is a possibility that Logan will need a PICC line placed in order to infuse a benzodiazepine so that his seizures remain at bay. A PICC line is like an IV that will go in his arm but this line can stay in longer. It is the best way to assure he is comfortable. The rest of his medications can be given in tiny volumes in his feeding tube or rectally. 

 

In the next day or two we will have the final plan in place to allow Logan to be as comfortable as possible as his time draws near. We are now coming to the last leg of the journey. When I went in to say good morning to him today he opened his eyes with the saddest look. He just looks so tired. From here on out things are going to be so hard. I keep saying to myself, "I'm not ready" but I know he is so I have to be too. Joel is staying home from work now. He only had a couple weeks left until school was out for summer. We need to have some tough conversations with Lauren too. She has been asking a lot of questions lately and I almost feel like she sees the changes for Logan and interprets them better than we do. She has also seemed to be spending more time with him and talking about him more.

 

We have no idea how much longer we have with Logan but we will make every moment count. Please pray for us and Logan. We could really use it to continue to lift us up.