I have been meaning to update the blog for a few days, but every day seems to bring a new change or challenge and I wait to see if we will level off. I think change is the word of this season, so I will share the current normal.
Wavey remained fairly stable throughout the end of the last week and over the weekend. Although sleepy at times, she has had periods of bright eyedness and a few glimmers of smiles.
Wavey has been continuing to have difficulty tolerating her g-tube feeds, so on Friday I took her in to see her Gastroenterologist. We changed her feeding plan to a 24 hour continuous feed and diluted her formula with water to try to alleviate the pain responses we had been seeing.
On Monday we took her to CNMC to see one of our favorite doctors and a valued member of Team Waverly & Oliver. She hadn't seen Waverly in a few months and was copied on a lot of emails. She wanted to *see* Wavey and offer any support she could. She was incredibly helpful with some medication questions I had.
One of the more difficult changes for me has been managing Waverly's care. We have always treated symptoms and been aggressive with her care. With the regression we have seen over the past few weeks in particular, I feel like we have moved from symptom management to pain/comfort management. We have had to make difficult decisions involving keeping Waverly pain free, but sleepy. After seeing Waverly wince when simply touched, the decision to move to this plan was clear. It is just taking me longer than expected to completely adopt it as our new way of life.
Tuesday morning Waverly continued to look puffy in her face in particular. Our hospice nurse visited and was concerned that she is retaining way too much fluid. She advised us to stop her feeds for 24 hours and allow her body to release and absorb as much of the fluid as possible. Waverly's lungs sounded fluid filled and she felt we needed to act quickly to prevent pneumonia.
My anxiety is definitely heightened once again and I feel like the short window of feeling we had leveled off is gone. Our nurse is coming back to check on Waverly tomorrow afternoon. Until then we will restart her feeds at noon today with less volume and at a slower rate.
I have identified very strongly as a mother in the special needs world. As much as the transition was hard fought and filled with sadness, I eventually felt comfortable and understood. I learned the language, how to navigate, and found an identity there. I am realizing that I am now shifting worlds again. Leaving behind the land of IEPs, developmental ages and inclusion. Waverly is now medically fragile and she is on hospice.
That word holds so much power. When I say it, people get it. I no longer have to explain Sanfilippo Syndrome, rare disease, progressive disorder. I simply have to say she is on hospice and I am understood.