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.