My Sweet Savannah (medical expenses)

My name is Ray Smalling. My daughter, my “Angelface”, her momma’s “sunshine” aka “My Sweet Savannah” (as she is known on her Facebook page) is going through a horrible nightmare right now. She is an adult with special needs including intellectual disabilities and she is the light of not just my family but also the community. In the beginning of 2020 she started getting more and more of what we thought at the time were migraines. June 1, 2020 we learned she had intercranial hypertension and that it was so bad that she could go permanently blind at any moment, her optic nerve was hemorrhaging.

She was in the hospital for the first time the next day. The pressure of the cerebral-spinal fluid pushing on her brain causing the excruciating headaches was so high that my wife watched the eyes of the neurosurgeon doing the lumbar puncture keep getting wider and wider as the fluid reading shot up. He was nervous to do the shunt surgery she needed because of the way her brain is formed, he knew it would be difficult to get it in the proper place and for it to drain properly but there was no choice, it had to be done immediately. It actually had to be revised the very next day because it wasn’t in the proper place.

That was just the beginning of the nightmare. She has had a total of 16 hospitalizations, 8 brain surgeries, numerous procedures, tests and countless dr appointments these last 2 years. Even though this was all during the craziness of Covid restrictions where patients were not allowed visitors, they made an exception quickly every time when they realized Savannah could not function without her mother by her side. My wife Candice stays in the pull out chair next to Savannah during her hospital stays. Unfortunately many of her hospitalizations they did not allow me or her siblings to be there, they would only make an exception for one of us which was extremely difficult for all of us.

Savannah’s first 2 surgeries and several hospital visits were in San Angelo, TX. The head neurosurgeon there reached a point where he no longer felt he could help her any further and we were advised to try a larger hospital. As it is we live in a rural health area. It is a long drive for almost all of these dr and hospital trips, that was south of us so then we tried north, to the University Medical Center in Lubbock TX. She had a great neurosurgeon there who from the summer of 2020 through the spring of 2022 tried various things to relieve the pressure in her head. He revised the shunt that kept clogging up several times, changed to a different type valve, and even removed the valve completely and came up with an innovative shunt system because the “normal” types just weren’t working with her ventricles being so tiny.

Due to the fluid backing up in her head and not draining properly the scans she has been having now show that she developed a chiari malformation sometime in the last year- her brain is now being pushed down her spine, as if she didn’t have enough pain from her brain being compressed from fluid, she now has part of her brain being squeezed down into her spine.

Savannah’s neurosurgeon got to a point where he couldn’t even figure out how to help her any more. We did have a brief period of relief and hope in April when another neurosurgeon in the practice reviewed her chart and had her get a MRV (MRI of the veins in her head), it showed narrowing in one of the main veins in her head. She had a stent placed and she felt great! We had our sunshine back, and we all thought that was the end of the nightmare! Unfortunately the reprieve only lasted a couple weeks and then the pain returned. Her pressure went high again but now not only did her neurosurgeon not know how else to help her but she also has to take a blood thinner because of the stent so it is also very dangerous to do more brain surgeries. We were advised to go to an even bigger hospital in an even bigger city.

Savannah was hospitalized at the UT Southwestern hospital in Dallas in August. They tried to find non surgical methods of relieving her pain and set her up with an outpatient appointment with one of their neurosurgeons to try to figure out the next step. There were some mixups but she finally saw the proper surgeon last month. He reviewed everything but said he cannot think of anything beside what has already been done and he also doesn’t know what else to do to help her. We keep being told that she is one of the “most complicated cases” of IIH. He said her best chance of getting better would be to go to the Mayo Clinic in Phoenix AZ so he put in a referral for her to be seen there.

Savannah’s insurance company normally only pays for care within the state of TX. They want us to exhaust all other options in the state before they will make an exception. They found a neurosurgeon in San Antonio at the university/research hospital that has agreed to see what he can do. She has an appointment there for a consultation on Tuesday, November 15th. We are praying that he can figure out a way to help Savannah and get her out of pain once and for all! If he can’t and also says she needs to be seen by the Mayo Clinic, then my wife will have to fight the insurance company to get them to agree to it, but that would mean more delays for our little girl who is just suffering daily unimaginable pain.

To know Savannah, is to love her. As parents of a child with special needs you worry about them being picked on at school or out in the community. Savannah however is just pure light and love that people can’t help but like her. That is part of why this is so horrible, the light in her has diminished to where she just can barely manage a smile, and barely wants to live. Normally she wants to be surrounded by people, even just walking through the store she would talk to everyone and anyone, finding something to complement people on and brighten their day. She especially loved causing anyone who looked sad to smile. It was her mission in life, to make people smile! Now she keeps telling us she is hurting so much that she can barely smile and doesn’t recognize herself. Savannah needs to get some relief soon so she can be the light she always has been! She misses doing things she loves, she used to be in Special Olympics in several events over the years, she was in the choir in school, she volunteers with us as a family with the Symphony guild but she hasn’t even been able to attend the concerts lately that she loves because the noise hurts her head. It’s so sad that she is struggling to find the joy in life lately because of pain, hospitalizations, surgeries and to add to her growing depression from her medical situation she has also over the past 2 years lost close friends and loved ones. Finding someone who can fix the pressure issue in her head is absolutely necessary!

Savannah has insurance but out of pocket expenses add up, especially since we have to keep going further and further for appointments and hospital trips. My wife is a “stay at home mom” but with all these appointments and tens of thousands of miles driven to them she jokes that she is the stay at home mom who is never home. I am a truck driver and am not home much like I wish I could be to help my wife with Savannah, our other 2 adult kids with special needs and our home. My wife Candice has several serious health issues herself that she keeps putting on the back burner in order to care for Savannah. A year ago Candice even came close to dying because she put off seeing the dr for a condition that ended with her needing emergency surgery.

We have been encouraged over the last 2 years multiple times to start a go fund me to raise funds for expenses and we are finally giving in and doing this, along with a “burger bash” fundraiser that ALSA, a local car club is hosting next weekend for Savannah and our family. If you feel led to donate we will be forever grateful.

Please pray for Savannah, we need her to get better and for her to get her smile back so she can get back to doing what she loves, what she does best- bringing smiles and happiness to others!

Candice set up a page on Facebook in 2020 called “My Sweet Savannah” in order to update everyone on Savannahs medical journey. She was getting so many requests from people she didn’t even know to keep them in the loop that it became obvious we needed to have a more public means of updating others. Feel free to check out the page for more information on Savannah and what she has been through and to see what answers we get.

If you have gotten this far, thank you. Thank you for taking the time to read this lengthy story. Thank you for any prayers or well wishes and thank you for any donations made. We are humbled by all the people who have shown love, helped us in any way and have been praying for my family. We are all truly grateful.