Prayers for Madeline: Chiari Surgery on January 5, 2022

Madeline is having surgery on January 5, and we covet your prayers over the coming weeks.

A few months ago Madeline began noticing pain in her hip. We visited a doctor who referred us to The Shriner’s Hospital in Greenville. This resulted in an x-ray of her back. She was diagnosed with scoliosis (22% curve), which is significant but not debilitating. It does, however, explain the pain in her hip. She wears a brace at night (it is blue camouflage) which is uncomfortable but will stabilize the spine as she grows. Scoliosis is as much structural as neurological, and we were referred to a pediatric neurosurgeon in late October.

On Tuesday, November 9, Madeline had an MRI. It was supposed to be less than an hour long, but we managed to enjoy the experience for three hours. A few days passed, and we assumed it was simply scoliosis. We met with the doctor on November 17 and received significant news from the MRI. Madeline suffers from Chiari, which is simply stated, compressed brain tonsils. This puts intense pressure on the brain every time the heart pumps blood. It is quite possible that Madeline has been quietly experiencing headaches for a long time. This is not an uncommon condition, so we have confidence in the diagnosis and recommended procedure, but it is still scary for us.

 

If this isn't bad enough, she endured a swallow test early in December, and was additionally diagnosed with Dysphagia, which can lead to aspiration and pneumonia. Scoliosis and dysphagia are side effects of Chiari. Our spirits were dashed with the diagnosis since it has meant Madeline cannot drink liquids until following the surgery (assuming the surgery will correct the dysphagia). The absence of liquids, especially water, is a peculiar thing. We try to thicken liquids, but thickener is not the most appetizing additive. The benefit is that she can have as many smoothies, Coke slushies, Frapps, and Milk Shakes as she desires. But trying to figure out what to drink is frustrating to her, and the extra effort to prepare for a meal is exhausting amidst everything else she is feeling.

 

It just seems that each week has brought additional difficulties, and it is difficult to fathom the thoughts and feelings Madeline carries as she awaits surgery and lives as an adolescent. Maybe some of you can imagine the pain for her parents; the moment reminds me of Simeon's words to Mother Mary, "and a sword will pierce through your own soul also." I often say there is "a lotta pain in the world." This feeling is all the more true in our household right now as we cannot fix Madeline's suffering and await the day of surgery which feels equally out of control. (Richard Rohr once told us, "suffering is simply the feeling of being out of control.") Seems an apt description of life right now.

Madeline will go for surgery at The Children’s Hospital in Greenville on Wednesday, January 5, 2022. The surgery has two paths depending on the severity of the compression. The first is shaving the skull bone to release pressure. If this releases the pressure, then we will be done. However, if the pressure remains too high, the doctor will enter the brain and release additional pressure through the Dura by adding a “dura patch.” The first phase is a two day recovery (2 nights in the hospital); the second will add a few more days (3-4 nights in the hospital).

Again, we covet your prayers. Please pray for Madeline’s spirit as she waits a few more days for the surgery (we tried to schedule it for December, but you can imagine what OR scheduling is like). Please pray for Covid hospitalizations to remain low and for our family to remain healthy. Please pray for Dr. Troup and the medical team as they care for our daughter; also pray they remain healthy amidst Covid, flu, and holiday travel season. Pray for parental wisdom in managing a teenager who wants to go to school and for a patient who needs to stay healthy. Please pray for Madeline’s parents to remain calm and loving amidst the stress of pediatric medical care (Lindsay asked me to put that last request in bold). Pray for Madeline the first week of the year: for an ongoing courageous spirit, for calm, for health, and for a smooth recovery! 

Madeline turned 13 on November 26. As she enters the teenage years and at the same time faces all of these appointments and tests, we have been amazed at her maturity and calm. What a gift she is! Clearly, the Spirit of the Lord is with her these days.
We love you all and give thanks for the circle of friends that hold us together whether we are near or far from one another. Please know that as we add your name to this list, we are praying for you and your well-being, also. O Come, O Come, Emmanuel.

Peace to you,

Kyle and Lindsay Small

P.S. We will provide updates on this page the day before and the days following the surgery. If you would like to send Madeline a card or words of hope, our address is: 

Madeline Small

128 Cottonpatch Court

Greenville, SC 29607