Meet the McNeil Family

Meet the McNeil Family

Monday, October 19, 2015

Falling

Matt and I took Waverly to the NIH today to see her primary doctor who specializes in metabolic disorders. She has known Waverly for over 7 years and we consider her a rock star. She is always accessible and willing to consider all options whenever we have had an issue. She was out of the country last week and returned to the States last night to a slew of messages and some panicky texts from me. Her nurse called me last night and we chatted for about an hour regarding the changes. They decided to admit Wavey into the Day Hospital to run a bunch of diagnostic tests.

After a very long day, they discovered one infection which can be treated with antibiotics. It could be the culprit to some of the issues plaguing Waverly, but not all of the changes we have seen over the past two months.

We have a few teams of doctors managing her care: Hospice and they know end of life. NIH team and they know Sanfilippo. Palliative Care and they know pain management. All great doctors. But not one of them is an expert in end of life care for kids with Sanfilippo.

Our NIH doctor was honest to say that although she has diagnosed kids with Sanfilippo and managed Waverly & Oliver's care over the years, she has never walked through the end of a life with an MPS III patient. And our Hospice team has never seen a child with Sanfilippo before.

We left the appointment thankful to have something to treat (i.e. the infection), but feeling at a loss to explain everything else.

Life with Sanfilippo Syndrome has always been bumpy. Changes come and we have to adjust to new normals constantly. There are dips and highs, but lately we have felt like we are free falling.

Seizures. Irritability. Pain. Tremors. Sleeplessness. Crying. Inability to tolerate her feeds. Sleepiness during the day. Urinary retention. No more smiles. Limited eye contact. Drooling. Irregular heart beat. Aspirating.

I want to stop falling and land safely, even if that means navigating a new normal. I am afraid of hitting bottom.




17 comments:

erin heiser said...

Oh, my friend. I love you. I hear your words. I'm sending you so much love.

adamedwin said...

Thank you Shannon for keeping us in your thoughts through your words. I think of you all so often and send what I can

Jeremy Mask said...

Know you're not alone. No 2 journeys are the same but we gather from and experience so many different routes and hope for guidance, directions and landmarks to lessen the bumpy, pothole roads. So many doors are open and lights lit to help you take a rest, refuel and gain strength and support for the rest of the trip.
So sorry that you are experiencing so many feelings and emotions that noone feels. We come close, you have a community and I AM always here!
Much love <3 <3 <3

Deanna said...

Love to you and your family... ❤️❤️❤️

Heidi said...

Oh Shannon, the falling. Having no control over anything. No one else having any control over anything. Ugh. It is crazy making and chaotic and it steals energy and any strand of sanity we have left. I'm sending love and energy and, most importantly, the parachute of hope.

Chris Piper Risner said...

So hope you know how you are admired for your courage and strength and love you give your children while dealing with this terrible disease. Please know we are thinking of you all and hoping for you to continue to have the strength to cope.

Camille Gardiner said...

Keeping Waverly in our prayers.

Camille Gardiner said...

Keeping Waverly in my prayers.

Camille Gardiner said...

Keeping Waverly in my prayers.

Anonymous said...

I do not know you and I have no idea how I ever found your blog a few years back. I just want you to know that I'm thinking about you and praying for your family.

AO said...

Praying for you and your family.

Amy Jackson said...

Prayers and hugs for Waverly and the family. My Ladies Ministry is praying for you all every day.

Amy Jackson said...

Prayers and hugs for Waverly and the family. My Ladies Ministry is praying for you all every day.

Angie Bartos said...

Thank you for taking the time to articulate your thoughts... it sure does help us to pray more specifically and encourages us to keep praying. Love and warm thoughts to you and yours!

Another parent of a sick child. said...

So much love to Waverly and your family. You are so strong and so resilient. Falling is impossibly hard. Your new normal is coming, and you are handling it with so much love and grace. We are praying for you.

Another parent of a sick child. said...

So much love to Waverly and your family. You are so strong and so resilient. Falling is impossibly hard. Your new normal is coming, and you are handling it with so much love and grace. We are praying for you.

Another parent of a sick child. said...

So much love to Waverly and your family. You are so strong and so resilient. Falling is impossibly hard. Your new normal is coming, and you are handling it with so much love and grace. We are praying for you.