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.