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!
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!
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