Meet the McNeil Family

Meet the McNeil Family

Wednesday, October 28, 2015

An Update on Wavey Mae Moonshine

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.

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.

18 comments:

Amy Jackson said...

Continued prayers for you, each of you, and your family. My church and Ladies Ministry continue to pray as well. Love from Ohio

E said...

Our family continues to pray for yours as you walk this road, and especially now for Waverly. Thank you for your transparency and your courage to share your life with us. It impacts us deeply and we truly care. With love, Elisha

Barb Hottle said...

How God has entrusted you and your family with such two beautiful lives is amazing. May He continue to strengthen and give you wisdom, peace and comfort. Prayerfully, Barbara (friend of Linda)


Carrie said...

Praying for you. There really are no words, it is a very hard time and I will be praying for strength for all.

Pat Cox said...

Oh Shannon. We will be lifting you, Matt, Wavey and Oliver to our Father's hands. My heart breaks each time I read an update. I don't even know you and I want to be there to help you out in any way I can. Such is the bond in the Body of Christ. Giving Waverly butterfly kisses so there's no pain.

Pat Cox
Syracuse

Stephany (a friend of Tammy) said...

Holding you, Waverly and your family in prayer...that you would feel the gentle love of Jesus carrying you..

Anonymous said...

Continued prayers for all of you now. We've been forever impacted by your story and your beautiful children.

Cindy Stogsdill said...

Shannon, I have followed your blog the last few years. As a mom, my heart aches for you as you walk this road. I marvel at your willingness to share your family's journey in such a public way. I will continue to pray for your family as you take this journey. Hugs from this mom to you.

Catherine said...

Praying for you and your beautiful family.

Alicia E. said...

Shannon and Matt: I was just revisiting some of the blog posts of the past - and came across the video montage in 2011. How lovely. I had listened to "Fix You" by Coldplay a hundred times before, but never heard it before tonight. May God grant you strength in these hours. Big hugs.

Susie said...

Prayers for the hospice team to keep sweet Waverly as comfortable as possible. And prayers for mom and dad for peace, acceptance, and an abundance of faith. Sending love and prayers from Springboro, Ohio.
Susie (Reed) Clark

Julie said...

So very sorry for this new normal, for the hospice word, and all of the unwelcome changes you are facing. I can't begin to fathom how this must feel. It makes the struggles I face with my littles seem so insignificant. Your journey has made me slow down and realize each day is a gift.

marnie said...

As a mom and grandmother my heart is breaking for you and your husband.
May you continue to feel God's presence. Many prayers.

Camille said...

Love, hugs, and prayers to your family.

Sarah x said...

Sending you lots of love. I've been reading your blog on and off now for about 6 years and feel it's now time to actually make contact with you. I'm so sorry. Meaningless words. But I am thinking and praying for you and your family and of course for Waverley and Oliver.

I can't imagine what you go through on a daily basis and I can't imagine your pain and your stress levels. But I can imagine giving you a big hug and if I could I'd take your load for just a time.

With love, prayers and best wishes.

Sarah in England.

Jenny said...

My thoughts and prayers are with you and your beautiful family. I found your blog when my own daughter was receiving hospice care several years ago. My heart aches with and for you. I am so sorry for all that you guys are facing right now. May peace find you and surround you in moments when you need it most.

D.M. said...

Shedding tears with and for you, Shannon. No other language than that seems appropriate.

Michelle Bernier-Toth said...

Holding you all in my heart.