Where shall we begin? We are Amy and Jon DeNapoli and would like to share the story of Amy’s Traumatic Brain Injury and how it changed our lives. We will also use this as a platform to keep everyone updated on Amy’s progress and we hope to offer some piece of mind to those and their loved ones affected by a T.B.I.
Amy and her daughter visiting Walt Disney World a few weeks prior to her accident.
This is our story…
In the fall of 2018 things seemed to be heading in the right direction, life was good. Amy was a stay at home mom while also teaching our then 8 year old daughter, who was homeschooled. She always tried to stay busy whether it was championing a good cause, helping out friends or taking our daughter on field trips. This was also an exciting time because we were in the process of building a new house, something that was many years in the works.
November 19th, 2018
Everything changed at approximately 5:00 pm on November 19th, 2018. Amy, was in her Ford Transit Connect en route to pick up our daughter. As she got the green arrow and began her left turn, a truck and trailer weighing 29,500 lbs blew the red light and t-boned her at roughly 65 mph. Amy was unconscious by the time medics got to her and was scored a 3 on the Glasgow Coma Scale which is the lowest score possible, but she was still alive. They inserted a chest tube at the scene and she was airlifted to Orlando Regional Medical Center in Orlando, FL.
Here’s accident scene a few days later. You can see just how far the force of the impact pushed her from the intersection.
This was what was left of her Transit Connect. The fact that she even survived is amazing and really says a lot about the safety of the vehicle. If you own a Ford make sure you have the “911 assist” feature activated (it’s free). That feature alone very well could have saved her life.
Have you heard from Amy?
These days just about every one of us has a cell phone. Aside from browsing and shopping, we also use them to call for help. One thing we don’t think about is what happens if we can’t call for help? How do our loved ones find out? Jon received a call at work from his father asking if he’d heard from Amy. She was supposed to be at their house about an hour prior and wasn’t responding to calls or text. Running late wasn’t necessarily out of the norm for Amy, but not answering her phone was. Sometimes you just have a gut feeling, and that feeling is what made us begin our search for her. Jon left work and began driving home to see if she was there as his sister began calling the local police departments trying to find any information. Finally around 7:30 pm (about two hours after the accident) we found out she was at Orlando Regional and began heading there. The hospital would not release any information to us over the phone, at this point we had no way of knowing if she was even alive. All we knew is she was airlifted there in critical condition.
After sitting in the hospital waiting room for what felt like hours (realistically it was probably about half an hour) we were finally able to see her. She was in the ICU in critical but stable condition, yet she was still unresponsive. Her physical injuries consisted of 4 fractured ribs, a lacerated kidney, fractured scapula, 3 stitches in her forehead and a punctured/collapsed lung. Those injuries are no walk in the park, but not the worst news considering the nature of the accident. Her CT scan came back ok other than some bleeding and swelling in the brain which was minor enough to not require surgery. Our hope was that her unconsciousness was a result of all the meds administered and she would wake up once they wore off which would be around 2:00 am. We just needed her to wake up.
Traumatic Brain Injury (T.B.I.)
Jon didn’t sleep that night, hoping to get a call from the hospital saying Amy woke up. Unfortunately that call never came. By morning all the meds wore off but her condition hadn’t changed which meant there was some sort of brain injury, we just didn’t know to which extent. We had to wait for a MRI to determine the cause, since the CT scan wasn’t clear enough.
The medical staff would routinely test to make sure her condition didn’t worsen. One way this is done is by administering the Precise Neurological Exam which tests her response to pain. They pinch specific areas of the body (near the shoulder is one spot) and her response would help determine her condition. For example, moving her hand toward the pain would score higher than pulling away. Two days later Jon got a call early in the morning from the neurologist, Amy didn’t respond at all to the test that morning. There was a chance this was due to swelling in her brain and they would have to insert a small tube into her skull for Intracranial Pressure Monitoring. About 15 minutes prior to the procedure taking place Amy began to respond better to the neurological exam, effectively calling off the procedure. Amy had always been a bit of a procrastinator, but this was taking it pretty far!
A week or so after the accident Amy was finally able to have the MRI. It confirmed she had a Traumatic Brain Injury, Diffuse Axonal Injury (D.A.I.), or sheering, in her mid brain stem. At this point she was still scoring only about a 4 out of 15 on the Glasgow Coma Scale. That, combined with her MRI results allowed the neurologist to conclude Amy had about a 50/50 chance of not waking up at all or not making a good recovery if she did.
Wait…and then wait some more
There is still far more unknown than known when it comes to the brain and brain injuries. The one certainly is that it takes a very long time for the brain to recover. Years. You know how you see a coma patient in a movie go from comatose to wide awake and back to normal seemingly overnight? Yeah, that’s not how it works unfortunately. On average, the first 6 months to year following injury is where you’ll see the most progress made but the brain will continue to heal for years, perhaps even the rest of your life. It’s an encouraging piece of information to have when living with a T.B.I.
Probably the most important advice we can give to someone who has a loved one in a coma is to have hope. Don’t ever give up. On average a coma will last between 2-4 weeks but it can be anywhere from a few hours to years. It’s important for a coma patient to hear familiar voices. Talk to them, even though they are not able to respond at all does not mean they aren’t hearing you. Read to them, play their favorite music, tell them they are doing a great job. The brain will process this information, and it’s been known to have positive effects on many people.
Look for little signs that could signal improvement. It’s amazing how much those little things can help you through something like this. About two weeks went by without any response from Amy, and then one day she began to occasionally respond to certain commands like “squeeze my hand” or “raise your eyebrows”. These responses were limited and some days she wouldn’t respond at all, but it was a step in the right direction. This meant her brain was capable of processing information, even if only on a small scale. Don’t be discouraged if your loved one has days of not responding. That is very common and should be expected.
Our new normal
Nobody ever plans on something like this happening to them or a loved one. When it does we are faced with two options, either fight and push forward, or fall into a hole. Giving up when you are faced with a catastrophe is very understandable, but your loved ones will need you to fight. Seek help for yourself if you feel you can’t handle it. There is no shame in asking for help, be it emotional or financial.
Our lives changed the instant Amy was hit, and it was up to us to adapt. This is our new life now. One of the ways we have been able to do so is by trying to maintain a “normal life”, doing things like spending time with family or watching our favorite movies. I can’t stress enough how important this is.
Another thing we had to adapt to was the financial impact we were now enduring. I’m not even talking about the hospital bills (we are over $1.5M in medical bills as of this writing, for perspective). There’s an even larger impact we faced. Jon was the sole source of income for our family up until Amy’s accident. Now his “job” is to care for Amy and their daughter, which means he could no longer work. With the help of some dear friends we began a GoFundMe campaign (link HERE), which is still very much active. We highly recommend doing the same thing if in a similar situation. Caring for someone with a T.B.I. is a muli-year commitment, life long in many cases.
December 8th, 2019
Jon and their daughter arrived at the hospital in the morning just like they did every other day, however today was different. As they walked toward Amy’s room her respiratory nurse jumped up and came walking towards them. Panic set in at first, thinking something must be wrong. However, as she approached we could see excitement in her face and we knew the news must be good. Indeed it was, while receiving her morning respiratory treatment Amy opened her eyes!!! This was the moment we have been waiting for, almost 3 weeks to the day after her accident. There was still a very long road ahead, but this was huge progress.
As with the eye brow raises and hand squeezing, opening her eyes was only on occasion and not always on command, but that was ok. Progress is progress, no matter how small or slow. Over the next couple of weeks her eye opening became more consistent, and she even began to track things occasionally. Within a month of her accident Amy was scoring around a 7-9 on the Glasgow Coma Scale, and considered to be in a “minimally conscience state”, or MCS. It sounds bad, but it’s much better than completely comatose.
This was the first time we saw her eyes in three weeks, something we will never forget.
The big 4-0
December 31st, 2018 was Amy’s 40th birthday. Friends and family spent the day with her even though she wasn’t “awake”. It was important to all of us that we be there for her, we knew that’s the way she would want it. She was making progress, but she would still have days of not opening her eyes at all. Sometimes almost a week would pass without anything from her, but that’s all part of recovering from a T.B.I.
By mid January (two months since her accident) she was starting to have more and more movement with her mouth and tongue, but not making any sounds. She still had a trach tube in her throat which could have been effecting her ability to make sounds. The nurses would soon begin to test her by capping the tube to see if she was able to maintain a good oxygen level (95-100).
By the end of January Amy was becoming more and more aware of her surroundings. She wasn’t talking yet, but it looked like she was really trying. She also began to look directly at people as they were talking which was a great sign. Tracking things with her eyes, making eye contact and turning her head toward sounds were all indicators that her brain was continuing to recover. Even though she was heading in the right direction, her current pace of recovery was leaning towards her needing to be placed in a long term care facility. She just wasn’t capable of doing therapy as of yet.
Amy spending time with her daughter. January 30th, 2019
February 6th-7th, 2019
We continued our daily visits as we awaited her to be placed into a long term care facility. On the evening of February 6th we paid her a visit with our dog (a Great Dane who is also Amy’s service dog). Something seemed different, even just the look on her face was as if something “clicked” in her brain. She acknowledged us with eye contact and mouth movements as we walked in (“kissy face” was her go-to), she even patted the dog on her head. The next day she was scheduled to receive a smaller trach tube, which would potentially allow her to communicate easier. As we left she pulled Jon and their daughter toward her and attempted to give each of them a kiss. It was kind of a mouth open bite, but the attempt was there. This left us with a great feeling heading home.
The procedure went well but she didn’t make any sounds or attempt to speak for the nurses. When Jon and their daughter arrived late morning they capped the trach again and told Amy she can once again attempt to make a sound. Within about 30 seconds she looked over at her daughter and yelled her name. It was mumbled, but clear enough to know what she said. We, including the nurses, were all in shock. What a moment to be a part of. Up until this point we had no idea if she’d ever talk again, or if she had any of her memory. One word answered both those questions.
Time for rehabilitation
Once her trach tube was fully removed Amy was cleared to be transferred to a short term rehab facility, no more long term needed. She began inpatient rehab on February 21, 2019 at Brooks Rehabilitation Hospital in Jacksonville, FL. Upon arrival she had almost no short term memory and was still unaware of what happened or where she was. She struggled with things like names of new people, her age and what year it was. She would also occasionally forget the names of her husband and daughter often calling Jon “Vegas”, the name of their old dog (This was later turned into a joke between Amy and Jon). In addition to short term memory issues she also had no use of her right leg, foot, arm or hand. Her “trunk” control (core strength) was also non existent which meant she was completely unable to sit up on her own. Her speech was very limited and slurred, and she required all food, liquids and meds through her feeding tube.
Her rehab schedule was 7 days a week and consisted of speech, occupational and psychical therapy. They also helped her establish a sleep/wake cycle which is very important when recovering from a brain injury. Speech therapy would typically start each day “quizzing” her on the date, her name, where she was and similar questions. As the time passed she got better and better with her short term memory. They also worked on her ability to swallow various foods and liquids, within a week or so she was beginning a purée and honey thick diet. Physical and occupational therapy would constantly work on her right side and trunk. At first it would take 2 or more therapists to help move her and hold her up, by the time she left she was able to sit in a wheelchair on her own. An absolutely huge amount of progress in a relatively short time.
As much this therapy helped her, she still certainly had her fair share of struggles. Most notably as her condition improved, so did her awareness of what happened to her. For months she had no idea she was in an accident or that she had a brain injury. Once she became aware of her condition she began to rebel, which comes as no surprise for those of us who know Amy. When she would be left alone in bed she would have a habit of pressing the nurses button because she wanted attention. One time left near a light switch in the hallway she decided to turn the lights on and off until she got attention. The staff got a kick out of it, and really seemed to take a liking to her. They kept her incredibly busy every day. She certainly didn’t have much down time, she just didn’t want ANY down time. At night they tried putting gloves on her hands to help prevent her from pulling on her feeding tube out of frustration. Despite the fact that she only had use of her left hand, she would manage to somehow remove both gloves within about 30 seconds. Actions like these could be upsetting if the person was more reserved prior to their injury, but they typically don’t last long. In our case this is Amy, T.B.I or not. She knows what she likes and dislikes and will have no problem letting you know. It’s also why anyone who has gotten to know her loves her.
On March 20, 2019 she was discharged and headed home to continue outpatient therapy. She still had a long way to go, but she was heading in the right direction.
We will be posting another update soon that will go into what it’s like living day to day with a Traumatic Brain Injury, and we’ll also take a stab at podcasting!
Amy, Jon and their daughter with her therapists on March 20th, 2019. Brooks Rehab, Jacksonville, FL.