Avleigh's Journey

I’m about to move outside of my comfort zone and get real with everyone. This will probably be one of the hardest blogs that I ever write, up to now at least. These past few weeks have been the worst weeks of my life. As most of you know from her Facebook group, it all started out with sudden increase of severe dystonia. These movements were identified to be coming from the pain she was feeling from the nerve damage in her GI system. We tried medicines to help with that pain and to try to give her some relief. After a few weeks of running every test her team could think of and trying different things we decided it was best to move forward with hospice care. With that care, we were able to get her dystonia under control. Sadly her body had other plans. Her pain just continually kept coming back, requiring more and more pain medicine just to keep her comfortable. Her GI system was slowly shutting down. We’ve adjusted her feeds based on her signs of comfort. This is the hard part…

We’ve vowed early on in her life that we would always put her best interest first, quality over quantity. But when that quantity is so near the end it is really hard to stick to it. Over these last few weeks I haven’t posted or blogged about all the details of what’s going on because it’s very hard. Hard as a mother, hard as a caregiver and it’s something that maybe I felt that if I didn’t write about it that maybe it wasn’t happening. I write on Avleigh’s Journey not only to share with others, especially other special needs parents, but for my own good. It helps me to get my emotions out and to put what’s going on in her life in perspective. But when that perspective is death, it’s harder than you could ever image.

We’ve gone back and forth with her doctors and even the hospital on things that we could possibly try to bring her back to us, back with her happy little personality. Unfortunately, PCH has progressed to a point where it has taken her personality away due to the discomfort and pain. If we were to give her life support options, it will not change her quality of life. She will just be here to be here for us… not for her.

So here’s her real update. She has slowly declined over these past few weeks. Right now we are keeping her hydrated the best we possibly can without making her uncomfortable. Her blood pressure is slowly decreasing and her respiratory rate is very low. She has no energy and hasn’t really smiled in a week. Her body is no longer regulating its temperature; uncovered it drops to as low as 94.6 and covered she starts burning up. So when I give her updates, it is very true on her comfort and peace levels. Days that were rough I didn’t give updates because at those times are when she needs us the most. Those are the hardest days for all of us. Her precious little body is so tired but yet holding on so strongly. When you pray for us, pray for her comfort until she can escape from this body that has held her captive for 6 years. Pray for peace and joy as she joins Jesus and all our loved ones in heaven.