It was the news no parent ever wants to hear. We had never heard the term before, let alone suspected our beautiful, energetic, intelligent, and athletic son had anything wrong with him. Our worlds were turned upside down. For those wondering how you would even know your child may have a malformation in their brain, let me describe for you how we came to learn the news that changed our lives forev
er. On the morning of February 24, 2009, Joey woke up for school with right sided numbness and double vision. As his mother, I figured he was just tired after a three-day weekend, so I took him to school. After I dropped him off, I had a bad feeling I just couldn’t shake, so I decided to call the school to see how he was doing. I was told he was acting odd and kept rubbing his eyes. I knew right then I needed to have him evaluated, so I picked him up and we went to a local ER. Joey passed all his neurochecks and the doctor agreed that he may just be tired from the long weekend, but I insisted that a minimum a CT scan of Joey’s brain should be performed. The doctors agreed and Joey underwent a CT scan of his brain. When the results came back, the doctor asked to speak with me outside in the hallway. My heart dropped. The doctor put his hand on my shoulder as he pulled up the image of Joey’s brain and showed me a large, round mass in the middle of Joey’s brainstem. The doctor told me that air vac would be there in five minutes to take my son to a hospital in St. Louis, Missouri. Once Joey was admitted at the hospital in St. Louis, Joey was administered steroids for several days in an attempt to shrink the malformation in his brain. Once Joey was considered stable, we were sent home and told that they were trying to figure out a safe surgical plan. Joey was scheduled to have surgery on June 5, 2009 (my birthday) to remove the malformation. We arrived and they prepped Joey for surgery and took him back to the operating room. I requested to meet the entire surgical team that would be performing the surgery on my son. It was then that we learned what we thought at the time was great news. The doctors told us that the preop scans revealed that the malformation had shrank and therefore, not only was surgery not recommended, but it was no longer safe to perform the surgery without causing significant permanent damage. We were sent home and told that the malformation would be monitored. Joey was to undergo an MRI every six months to keep an eye on BOB. BOB is what my 10-year-old son named this malformation inside of his brainstem. Throughout the years, Joey had several microbleeds. Joey would exhibit similar symptoms and we would go to the hospital. Each time we would be sent home once Joey was stable. On April 8, 2016, I received a phone call from Joey while I was at work. He was with his Granny and told me that he was going to have her take him to the ER because “this one was bad”. At this point, Joey was being treated by a different neurosurgeon then who originally recommended surgery back in 2009. The following day, Joey’s then neurosurgeon told us it was time for BOB to be evicted as he was taking up a large amount of Joey’s brain stem. It was stressed to us that one more bleed would kill Joey and the outcome of opting for the surgery would be death or a few minor deficits (that he may require a year of rehab). A few weeks later, after consultation with his neurosurgeon, Joey made the decision to have surgery to remove the cavernous malformation. The surgery was performed on May 6, 2016. After the surgery was completed, every brain scan came back normal and it appeared as if Joey would be back on his feet in no time! That was not the case at all. Joey did not wake up after multiple different medical approaches were applied. On May 8, 2016 (Mother’s Day), Joey finally woke up. He started responding by faintly giving us thumbs up and wiggling his toes, but it was clear he was still not fully conscious. Joey was later discharged to a long-term rehabilitation facility, but Joey never fully recovered. It was clear something was seriously wrong following the surgery. In December 2016, we took Joey to the Mayo Clinic in Jacksonville, Florida in an attempt to hopefully find an answer for Joey’s failure to recover. It was then that our worst fears were confirmed. Following an MRI, one of the Mayo doctors looked at me and asked “Has no one ever told you what’s going on with him? Why he is the way he is?”. I proceeded to tell him that his doctor kept telling me he had no clue what was happening and they could not explain it. We went into a conference room and sat down. The doctor drew a sketch and informed me that too much of the surrounding tissue of Joey’s brainstem was missing from around the malformation, and that was the reason why Joey had these devastating deficits. While we were appreciative of finally having an answer, this news was devastating as we had to come to terms with the fact that Joey will never be the same again. Since Joey’s admission at the Mayo Clinic, we have been to multiple hospitals, rehabilitation centers, spasticity specialists, etc. in an attempt to help Joey. We have done everything imaginable to try to find a doctor that is willing to not only manage Joey, but figure out a way to control his spasticity and neurological storms. Spasticity is the result of damage to a person’s brain where your muscles are so tense you cannot move your limbs and your extremities turn inward. The spasticity has caused Joey’s bones to protrude through his skin – all while he can feel everything. Doctors keep telling us that they have never seen a case like Joey’s. They are amazed that Joey is totally aware, but suffers through these devastating conditions – unable to walk or talk, or even care for himself, and in constant pain every day. Since Joey’s surgery, I’ve done a lot of research about Joey’s condition and found that medical ma*****na had some truly dramatic results for people who suffered from spasticity. One day, as I filled up all of Joey’s syringes with his countless medications, it looked like a rainbow of pharmaceuticals, it was then that I realized I could not keep giving these to my son for the rest of his life; especially with all of the terrible side effects. The pharmaceuticals were causing me to lose my son. I could see he was deteriorating cognitively, and I could not lose my son completely. We went through the process to have Joey approved for a medical ma*****na card, and of course, he was approved. With medical ma*****na, I have weaned Joey off eight pharmaceutical medications. Medical ma*****na is the only thing that gives him any relief. As of today, Joey just celebrated his 22nd birthday. I am his primary caregiver and have dedicated my life to my son. Joey currently has a surgically implanted baclofen pump, four pharmaceutical medications, a G-tube (where he receives liquid nutrition and medications), Botox injections (every 3 months), and daily use of RSO oil. Joey is on continuous oxygen, which reminds him to breathe due to the thickening of the medulla oblongata. In other words, the signal that tells him to breathe is blocked. During his awake period, he wears a regular face mask and constantly reminds himself to breathe. At night, he wears a full-face mask connected to a trilogy machine (a noninvasive ventilator). Our home is equipped with all of the medical equipment required for Joey, and he never ceases to amaze us. Joey just completed his high school education through homeschooling and will receive his diploma! Joey completed his education despite only hearing the material and then testing on it by shaking his head yes and no to the answers. He had an amazing homebound teacher that would get the work from the high school and spend her own time re-formatting the material into true/false and multiple choice questions. Heck, even I have a hard time with math and I can see and write. But with the ups, there are the downs. Joey still suffers daily with tone and spasticity, trouble breathing, his eyes are fixed and dilated, his hands and feet are contracted (splints are not an option d/t pressure sores forming), and he cannot get the words out that he wants to. Joey remains immobile, suffers from dystonia, has trouble swallowing, and is extremely depressed (as you can imagine). Joey is 100% cognitively intact, and struggles every day to get out of the body he is locked inside. Now to my reason for starting this page. We need to find professionals who are willing to not only manage Joey’s care but to help him improve his quality of life. The doctors we are seeing now are wonderful, but they have flat out told me there is nothing further they can do and are only willing to manage Joey’s care (Botox injections and baclofen pump). We are trying to find someone that is knowledgeable and up for the challenge of helping my son. It is going to take someone who is meticulous about their work. NOTHING about Joey is typical or what people learn about in school. We need someone who will work with us in providing Joey the life that he deserves to live. We are willing to travel and do whatever it takes. We are not asking for sympathy or money. We are simply asking that you SHARE Joey’s Journey. �
