Here is my dad’s journal on Sherrin’s progress. Please scroll down to the bottom and note the bolded paragraphs which indicate the latest on Sherrin.
Save my Daughter
The Journey to Recovery
On Mother’s Day, May 13, 2012, I was in California visiting my Mom whose health had gone downhill and it was obvious that this would be her last Mother’s Day. At 4:30 AM I was called by my youngest daughter, Kaci, and told to hurry back because our 22 year old daughter, Sherrin, had been involved in a single car accident, received severe head injuries and was in the Intensive Care Ward. Of course, I wanted more information, but it was too soon after the accident to give a real prognosis. I was able to get on the 7:30AM flight out of San Francisco and returned to Virginia 6 hours later. Clearly, the longest and most difficult flight I had ever been on.
When I arrived at the hospital I rushed to the ICU and found Careen, my wife, and Kaci. Apparently, Sherrin was involved in a single vehicle accident in which she received a severe TBI and a Diffuse Axonal Injury (DAI). The accident occurred early in the morning and she was not found until one hour to 90 minutes after impact. Apparently, she walked away from the accident and collapsed on a field 25-35 feet away. Emergency response arrived and she was immediately transported by air to INOVA Hospital in Fairfax, VA. Upon arrival at INOVA she was put into ICU and lives saving measures were begun. She was rated as a “3” on the Glasgow scale (unresponsive and comatose). A “bolt” was placed in her skull to monitor swelling, intubated and put on complete life support. We were told the following day the prognosis was not good and prepare for the worse. It’s amazing how you key onto other people’s behavior when a situation like this occurs. After the Doctor told me to prepare for the worse the nursing staff became distant and would not look me in the eye. On May 15th a neurologist reviewed the MRI and CATSCAN and determined, although a DAI, he was 70-80% confident she would recover. I knew he was telling me the truth because the nurses soon after rushed back in and began talking to Careen and I. After two weeks in ICU, Sherrin received a tracheostomy and was transferred to a “step down” ward. Not following proper protocol, which calls for the patient to be monitored on the tracheal tube for 24 hours, she was moved in only seven hours and had severe difficulties in adapting to the tube and had to be suctioned every hour. For the next two weeks I worked to secure her admission at a rehabilitation center within the Washington DC Area. Frankly, I will freely admit that anyone who knows me recognizes I am a true pain in the ass and do not tolerate fools well. I had retired from the Army as a Colonel and have been pretty successful in the business world. I have never accepted no as an answer and believe with hard work and persistence you can accomplish anything. I don’t think the medical community recognized how far I would push the envelope to bring Sherrin back to normalcy. Doctors and nurses have their own opinions and sometimes are extremely arrogant and if you are not of the medical world they believe you have no idea how to take care of your family member. As time evolved and as I became more knowledgeable in the care that was needed for Sherrin woe to the medical professional that took that approach with me. The rest of this story will focus on our ongoing relationship with the medical community, Sherrin’s recovery and rehabilitation, but before I move on I have to thank the pros at INOVA Fairfax for saving her life.
As I mentioned I retired from the Army and was going to play every card I had to get the best care for my daughter. Figured with everything going on in Iraq and Afghanistan Walter Reed was the place for Sherrin to go to for rehab. I was told that because Sherrin was a dependent she was not authorized care at Walter Reed and we had to rely on the civilian sector for her rehabilitation. When I spoke to Sherrin’s case manager at INOVA she told me that Sherrin was only authorized care at an acute facility and recommended Kendrick in Richmond. The next day I took the 100 mile drive and toured the facility. Beautiful facility and great people, but it was a long term nursing home that would merely manage Sherrin and not motivate her. Came back and told the case worker “no dice” and she gave me a list of seven “rehab” facilities in Northern Virginia. I made a checklist and started the review process. After talking to each one of them I came to the conclusion that they were the same as Kendrick. I asked the case worker why Sherrin could not go to a Rehab facility and her response was that her “Glasgow Scale” was not high enough. The Glasgow Scale is a measurement to determine how conscious a patient is. As I mentioned earlier, when Sherrin was first admitted to ICU she was a 3 and now she was a 7. She was making progress, but not quick enough for the case worker. Relying on my military connections, I got the head of trauma from Walter Reed to call a colleague at the National Rehabilitation Center (NRH) in Washington DC to make an exception and get Sherrin admitted. An exception was made and Sherrin was admitted on June 5, 2012. Right now you are probably thinking that I did good and got the best possible care for my daughter. The real truth is not really. I relied on the case manager to be the subject matter expert for the care of my daughter. The actual truth is that she was not current and bullshitted me in her knowledge of rehab facilities. She recommended Shepherd in Atlanta, but never visited there and had no idea the capabilities of NRH. Throughout the United States there are 16 model centers specializing in TBIs. Sherrin’s case worker told me she was not eligible for a model center because her Glasgow score was too low. After I got her moved into NRH, I decided to go on a road trip throughout the United States to sample these model centers and soon discovered Sherrin could have been admitted to the majority. It was now too late because Sherrin was at NRH and I could not convince the insurance company that she would get better care at Shepherd in Atlanta or Craig in Denver. My first important lesson was never assume a health care provider has done their homework and is giving you the best solution for your loved one. It has to be trust through verification or you may lose a huge opportunity because you did not challenge the care giver.
Upon arrival at NRH it became apparent that the knowledge, skills, and initiative of a number of nurses and nurse technicians were questionable. You see, for an injury like Sherrin’s there are three things that have to occur during her rehabilitation: Pharmaceutical manipulation (adjusting the medications she is getting), rehabilitation therapy (occupation, physical and speech), and maintaining her medical condition. Manipulating the drugs is done by the Physiatrist, the rehab is done by specialists and keeping her healthy is done by the nurses and techs. The nursing staff at NRH rarely gets a patient in Sherrin’s condition and they were unable to adequately support her medical needs. This is partly my fault, because I pushed the envelope to get her into rehab before she had achieved the requisite Glasgow score. There was no continuity of care planning and the majority of staff did not have the skills to support the medical needs of a patient like Sherrin. Luckily, we were allowed to maintain a 24 hour vigil at Sherrin’s bedside to supervise the care she was given. Can’t tell you how many times I slept next to her not knowing if she would be awake the next morning. I positioned myself so I could see her breathing tube and monitor her vitals. We met with the family of another patient with the same type of injury and they expressed the same issues with the staff and that they too maintained a 24 hour vigil at her bedside. Lesson Number Two: You have to be an advocate (medical term for pain in the ass) and never tolerate substandard care.
NRH rotates residents through the different functions to train them on the brain injuries. During the weekends, there is only one physician to cover nearly 140 patients. Residents do not have the skill sets to recognize the different medical conditions that could affect a TBI patient. On several occasions we had to by-pass the resident and ask for the physician on duty to correct a medical issue. On each occasion the attending physician overruled the resident and agreed with Careen or I. A specific example concerning this lack of understanding occurred late the evening on August 31, 2012. The week prior, Sherrin became more and more agitated and appeared to be in significant pain. Her bowel movements had stopped and it appeared that the pain was caused by constipation (She had not had a bowel movement in four days). The attending physician prescribed several medications to correct the situation, but nothing seemed to work. He came to the wrong conclusion that Sherrin’s condition was caused by neuro storming and not constipation. This neuro storming condition typically occurs within the first 60 days after injury. In Sherrin’s case it had been nearly 120 days since the injury and the family asked her physician to consider other causes. Sherrin was in extensive pain and I asked for a physician to come in. The resident arrived and when explained the situation she agreed to give Sherrin 300mg of Tylenol. Sherrin was already receiving 650mg twice a day and I immediately challenged the resident’s decision and after an extensive argument I demanded to see the physician on duty. Once the on-call physician arrived she recognized that I was correct and prescribed morphine. Probably a mistake because one of the side effects in using morphine is constipation. But, I did not learn that until later. This is one example of several that occurred throughout Sherrin’s stay at NRH. Lesson Number Three: Doctors don’t have all the answer and you have to challenge their decisions when they do not make sense.
On September 2, 2012 Sherrin was admitted into ICU across the street at George Washington Hospital. She was not getting better and she was having problems maintaining her breathing. The attending physician made the brilliant decision to take her off the medications that she was given at NRH to try and determine what was causing the issues associated with Sherrin. This was absolutely the wrong course of action. I immediately questioned this decision asking the questions if he or his staff had consulted with NRH, did they have her medical record, and did they have her medication record from NRH. I was dismissed. Sherrin’s condition remained precarious, but it appeared that the ICU staff knew what they were doing despite the attitude of the attending physician. One of the items that were so frustrating was that some of the medications that Sherrin was taking at NRH is typically prescribed for neuro storming. For example, bromocriptine reduces diaphoresis and hyperthermia which Sherrin demonstrated during her “storming” episodes. Sherrin was receiving 30mg of bromocriptine daily at NRH and during the first week at ICU received none. After a week or so she started getting better, but I had to go to Afghanistan for a business trip. We asked the head of the hospital if we could keep her in ICU while I was gone and move her back to NRH when she was fully recovered. They agreed and we believed Sherrin was safe. On September 12, 2012, I returned from overseas and immediately had a family meeting with the staff of Washington Hospital. It was agreed that if Sherrin passed the prescribed testing that they would not insert the tracheal tube a second time (the first one had been out for almost 8 weeks). We assumed that based upon the family meeting, it would not be done for another two days. The next day, Sherrin passed the test, but after two hours produced too much saliva, was intubated again and scheduled for a second tracheostomy. Later I learned that botox injections could have controlled the saliva and the second tracheostomy was unnecessary.
Sherrin Baggott had been through hell. She received a second tracheostomy while in ICU because the ICU staff based lined her medications, refused to consult with NRH, and was unable to determine the root cause of this episode. She was in ICU for three weeks and not one medical provider from NRH walked less than 100 yards to see her and provide their input on her care or provide some sort of compassion to Careen or I. This was intolerable and was caused by poor coordination, lack of consultation, competency and arrogance. Once a patient leaves one medical unit to another the Doctors don’t talk, don’t coordinate and, in my opinion, are guilty of patient abandonment. Most large medical organizations have an electronic medical records system or EMR. NRH and George Washington Hospital are owned and administered by MEDStar Health. One would assume that each would have had access to the same EMR data base. Even though they are across the street from each other they don’t have a common EMR and, therefore, cannot share patient information through the web. Lesson Number Four: Force the medical community to talk to each other and don’t assume anything.
The next day I travelled to Kessler Rehabilitation Center in New Jersey. Careen and I had come to conclusion that Sherrin’s experience at NRH warranted an alternative. The key difference between NRH and other TBI centers is that NRH that it really does not typically administer to the rehabilitation of someone emerging back into consciousness. Sherrin’s Glasgow score was now at 10.
After a pretty lengthy review of TBI Rehab Centers throughout the United States we agreed that Kessler Rehabilitation Center was the best for Sherrin. Her attending physician was impressive and assured Careen and I that he could bring her back to consciousness. Kessler is a model rehab center that has patients with the same injury as Sherrin and is designed and equipped to support her recovery. The nursing staff is assigned to specific patients in monthly increments to ensure continuity of care. Due to the hard work by the Kessler staff, Sherrin completely emerged from a comatose state. Her cognitive and physical skills are returning, but her mother and I know it will take months to years to achieve a full recovery.
We recognize that there will be a point of time that Sherrin will come home and begin outpatient therapy. After hours of research, meetings, and visits we have come to the conclusion we have not found an adequate facility in Northern Virginia to support Sherrin’s recovery. We would love for Sherrin to be accepted into an outpatient program in the immediate area. I have talked to Mt. Vernon Rehab and because Sherrin is not able to go to the bathroom herself we have been told she is not eligible for treatment there. The next logical step is to find a neurologist or physiatrist in the immediate area that can oversee her recovery and a health care staffing agency that can provide her nursing and rehabilitation personnel to come into our home. We know of another family in our area whose son has come home after a lengthy stay at Kessler and I reached out to them to gain their recommendations. The result was not good:
Message : Hi This is John Baggott, Sherrin Baggott’s dad.
> If you recall I came by a few months to get some ideas on how best to remodel the basement to care for Sherrin. Took your advice and completed it just before Christmas. Sherrin is still making progress, but it is likely she will come home in a wheel chair and require continue therapy and nursing support. From what I can see there is no real solution for Sherrin in Loudoun County.
> Can you give me some names for people/organizations that can start her home rehab Thanks so much John
Response Message from Ken
We use PSA nursing and are happy (well, as happy as we can be) with the quality of nurses. It took us a year to find the one’s we liked.
As for therapy, I simply cannot recommend one. I hated them all and do Ryan’s therapy on my own. It’s a corrupt segment of healthcare… as far as I’m concerned.
My first step was to contact INOVA Health Care to get a recommendation, but had no luck. I decided that maybe if I reached out to INOVA Fairfax maybe they would have a recommendation on how best to proceed to bring Sherrin back home. They are the ones that saved her life and maybe I would get lucky. Brick wall at every attempt. After going through the due loop from hell I was finally directed to Brain Injury Services (BIS), a non-profit, headquartered in Northern Virginia. Its mission statement is “providing specialized client-directed case management services, day programs, supported living, and innovative support services that are either provided in-house or through contracted services.” When I talked to two counselors on the telephone I was shocked in their lack of knowledge about brain injuries. The first counselor asked me what a DAI was and could not elaborate on the professional qualifications of the psychiatrist she was recommending. The second recommended a facility in Wisconsin for Sherrin to go to. When I explained it was not a model facility and asked her if she had ever been to the facility to back up her claims on how good it was she responded “no.” BIS did provide a list of some of the providers in the area; of course there had not been a quality check on any of them. BIS also provided me a list of builders that remodel homes for the handicapped. Having already prepared our home for Sherrin I recognized some of the names on the list and discovered one that had given me a previous estimate 2.5 times more than what was required. Lesson Number Five: You must identify the care providers that will support your loved one.
Kessler is working with us to determine what the best follow-on is for Sherrin. They understand my frustration with Northern Virginia and the lack of coordination amongst the health care provider network. They are recommending a sub-acute facility that they can work alongside Kessler to support Sherrin’s care. If we cannot come with a solution for Sherrin at home then this may be our only option for her. This is not the optimal solution for Sherrin. If she came home she could be stimulated by her friends and be in a familiar environment.
Careen and I really believe the best course of action for Sherrin is to return home and achieve a multi-disciplined approach to her recovery. She needs a Physiatrist to help manage her medications and monitor her progress, she needs nursing care at home to take some of the burden off her mother and I, and she needs a superb rehab team to continue her therapy. Ideally, it would be in an outpatient setting where she can interact with other patients.
This is where we stand right now. Sherrin is still at Kessler and we are trying to work the next step for her. Hopefully, we can achieve the best solution to ensure a full recovery. Lesson Number Six: Don’t give up.
March 24, 2013
It has been a couple of months since I last provided an update on her status. Today, is March 24th, and Sherrin continues to make slow and steady progress. She is talking allot and her memory is coming back. She is getting some functionality with her body; she is eating puréed foods, is getting control of her bodily functions and does not like to be alone. As you can imagine she wants our attention all the time and it gets to be a drain. A couple of days ago I was called at 5AM and told Sherrin had a seizure. I called Careen and made the 4 hour trip back up to Kessler. Apparently, her doctor cut back her seizure medication by 25mg and that was enough to do it. It was not a large seizure, but big enough to warrant a trip to St. Barnabas Medical Center a short distance from Kessler. When I got to the ER at 9:30 Sherrin was calm and Careen had said she has all of her tests. I asked the nurse if I could talk to a neurologist to get his thoughts. Three hours went by and I finally had enough and called the President of the Hospital. Typical hospital bureaucracy with arrogant staff attitudes. If you are not part of the club the only way you can get anything done is to be a pain in the neck. Of course, I made enough of a scene that we finally got Sherrin upstairs and a couple of hours later the neurologist came in and got Sherrin hooked up to an EEG. The neurologist was fantastic and, of course, was never notified that I wanted to see her. After 24 hours I met with the neurologist again and she explained that Sherrin’s EEG was normal and it was so normal she could not tell that she had a TBI. Giving us more hope for her eventual recovery. After another 24 hours on the EEG Sherrin was allowed to leave St. Barnabas and return to Kessler. We should have expected that something like this would occur. As they continue to cut down on her medications you have to expect that her body would react. No one was at fault and we are glad we know that her brain functions normally and she continues to improve. Lesson 7: Recognize there will be curves thrown your way.
April 21, 2013
It appears our six month rehabilitation at Kessler is coming to an end.
Sherrin is medically safe and we are going to move her to JDT Rehab Center in Lincoln Park, New Jersey. Her attending physician at Kessler will still see her on an outpatient basis. The reason we chose JDT is the staff. All have been trained with or alongside the pros at Kessler and we will be able to design a physical therapy program that focuses on moving her to the next level of recovery. A change to be sure, but a change in the most positive manner. When she is off the feeding tube and eating on her own (she has already begun), able to go to the bathroom, and get into a car with assistance we will take her home. How long? Don’t know, but Toni Loyas, the CEO at JDT, said it is well within the realm of possibilities. Would like to express our absolute gratitude to the Kessler staff, especially Dr. Neil Jasey, in bringing Sherrin back to us. A miracle to be sure, but a long road still ahead of her.
Finished the Gabby Gifford book and found it quite inspirational. The lady has allot of guts and inner strength and her husband, Mark, is a hero in my book. I she continues to stay strong and complete her recovery. The one thing I found funny was Mark’s admission that he was not going to take the medical communities recommendations without getting a second opinion. As Yogi Bera said, “its Déjà Vu all over again.” I smiled when I read that he was going to double check the attending physician’s recommended course of treatment. The one thing I have learned throughout this entire ordeal is that Doctors do make mistakes and need to be challenged on their recommended treatment options.
May 10, 2013
Sherrin continues to progress slowly and surely. This past week was a bit scary. She had a couple of seizures on Wednesday, May 1st, and had to undergo a 48 hour EEG at ST. Barnabus Hospital. The seizures indicate that they were located on the top of her brain and were not diffused throughout. This is a big deal, because they know how to treat it with medications. They will keep her at Kessler for a couple more weeks before we move to the Turco facility. What was bothersome about the seizure episode was that the resident failed to contact her attending physician or her parents as they occurred. As a result, he failed to prescribe appropriate medications to stop the next two from occurring. Not a smart move on his behalf and I told him as much. It goes back to what has happened since this journey began and that is the family has to be informed as much as possible and must be involved in the decision making process. If the resident had called Careen or I when the first seizure occurred we would have made sure that the attending physician was called and that appropriate medications were given. We don’t need these types of bone head mistakes. Our trip to St. Barnabus was uneventful and I did not get security called on me this time. The staff in the seizure ward was excellent and did everything they could to make it as pleasant as possible for her.
The one bit of good news is that I was finally able to find Dr. Jonathon Fellus. He was in charge of the TBI Center at Kessler a couple of years ago and is considered to be one of the preeminent minds on the subject. He agreed to take Sherrin on and this week Sherrin will go through specific mind mapping tests to determine where the damage actually is and how to best repair it. He is an out-of-the-box thinker and, in consultation, with her attending physician may come up with new courses of action for her recovery. Dr. Jasey has done an unbelievable job returning Sherrin to us, but it never hurts to get a second or third opinion. Jasey studied under Fellus and a collaboration of these two brilliant Doctors could very well help Sherrin.
Can hardly believe it has been a year since Sherrin’s injury. From where she was to where she is now is an absolute miracle. Partly by the medical staff that has overseen her recovery and partly by Careen and the loving The folks at JDT know of Sherrin’s goals and are confident they can meet these objectives. Sherrin’s recovery will take a long time, but we are up to the challenge.
May 24, 2013
Sherrin is now fully established at the JDT Rehab Center. Right move. Kessler could not or would not take her to the next level. It’s amazing how quickly the medical community will pass the buck and not take responsibility for inappropriate actions. Four weeks ago the resident failed to take action and, as a direct result, Sherrin had three seizures and had to go to the hospital for a two day evaluation process. If the resident had called the attending physician or even I after the first seizure then one of us would have said to give her the medication that had stopped the seizure before. Yesterday, we travelled all the way to Summit Hospital for a scheduled MRI and discovered once we arrived that the clerk at Kessler told them that Sherrin did not have a Backlofin pump. Of course, Sherrin had the pump inserted in December. If I had not written and circled on the admissions chart that the pump was in place there could have been a serious issue afterwards and it could have been very detrimental. After 9 phone calls to Kessler I finally reached the head nurse and basically went ballistic and demanded an immediate phone call from her Doctor or Medical Director. Two minutes later I got the call from the Medical Director and gave him hell. Of course he was defensive and tried to defend his staff. He also indicated that I was a pain in the ass – or as the medical community calls advocate. Gee, tell me something that I don’t already know. I told him that I wanted an immediate investigation and if the clerk knowingly gave incorrect information I wanted her fired. I am so tired of correcting mistakes of individuals that continuously take the easier wrong than the harder right. If I ever get a terminal disease it will be “bucket list” time. Would much rather see Tahiti than have to deal with some of these fools.
Now the provider fight begins. As you have read earlier, we have elected to hire one of the best brain injury doctors in the United States to take a try with Sherrin. Some of his protocols are not necessarily accepted by the rest of the medical community and, of course, we will be fighting an uphill battle for reimbursement. Our attitude is that as long as it safe and it improves Sherrin’s medical and physical well-being then go for it. So far our insurance company has been great, but they have to follow established rules. Hopefully, we will work through this issue as well.
From what I have witnessed over the past year is that our journey is about the norm. We have heard several horror stories from families about health care providers that have made bone head mistakes. The only saving grace is that a loved one stepped in and corrected the situation before a disaster occurred. Hopefully, we are now past that.
June 10, 2013
Have been at JDT for about three weeks now and Sherrin is making unbelievable progress. Her therapists are wonderful and they are making her work very hard. They are working mostly in getting the tone and the spasticity out of her body so she in not restricted in making normal body movements. Needless to say, she is not that happy about going to therapy. We have begun neutraceuticals and are starting to taper her off some of the pharmaceuticals that she no long needs. In essence, she is no longer at medical risk.
The old Sherrin is coming back. She demands a whole lot of attention and wants her cell phone and purse by her side. She is starting to have normal conversations and her short term memory is improving. We still have a long way to go, but that’s OK. From where we were a year ago to where we are now it is a miracle. Right now we are watching Young Indiana Jones. No chick flicks for Sherrin.
Looking over the past year I can’t emphasize enough how important involvement by the family is. Doctors can make recommendations, but ultimately it is Mom and Dad’s decision. TBI’s are not understood well in the medical community. In fact, every drug that she was administered was first used for another medical situation. For example, Ritalin which is used to calm kids down acts as a stimulate for adults. I have been reading allot about neutraceuticals and think it is well worth the expense and effort to give them a shot despite what the conservative medical community says. My attitude is that if it does not put her at risk then we should seriously consider it. What we cannot do is wait for a miracle cure. It’s just not there. Recovery from a TBI takes time and the use of different medical protocols. In Sherrin’s case we will do whatever it takes to bring her back the same way she was the day before the accident.
August 19, 2013
Arrogance and Stupidity
Sherrin has been doing remarkably well. Her cognitive skills are improving and she began feeding herself about three weeks ago. We are very hopeful of a full recovery. JDT continues to push her hard and she is responding well. On Thursday, her Doctor at JDT was alarmed. Sherrin had a temperature, was coughing and had another seizure. He called me up and recommended sending her to the ER for a check-up. This particular Doctor is wonderful. He knew something was not right and that something had to be done immediately. Two days earlier her Backlofen pump had been refilled and apparently the Doctor that was adjusting it failed to program it correctly and, as a direct result, Sherrin got double the dose. In other words she over dosed. As a result of this mistake she had another seizure and was immense pain. Another ride to the hospital and admission into the ICU. The staff in the ICU gave her every possible test and when Careen and I told them to test her pump to see if it was working, it took eight hours for the technician to come in and determine there was a huge issue.
Of course the Doctor that made the mistake is not authorized to work at this particular hospital and they began a search of the hospital to see what physician was authorized to reset the pump. After an hour of playing “stump the chump” I was fed up and called the President of the hospital and said if they did not correct the problem they would have the largest class action suit in their history. As a result of my temper tantrum, in less than ten minutes a physician showed up and corrected the problem. If the ICU staff had paid attention to Careen and from the very beginning Sherrin would have not suffered for 8 hours. Sherrin was still in allot of pain and now had to go through withdrawal. It is now 6 AM on Saturday and she is resting comfortably and appears to be much better. This entire situation would never had occurred if the Doctor who originally programmed her pump had double checked the settings and the ICU staff had paid attention to Careen and I.
Interestingly enough while I was in the ICU I listened to the head physician as he was lecturing the staff and he stated that the family knows more about the patient than the Doctors and that they should listen to the family. This has been the situation the entire time with Sherrin. The vast majority of medical providers are caring and concerned professionals, but they need to listen to the family. Careen and I can merely glance at Sherrin and tell if she is doing well, in pain, or need of assistance.
So now I begin the review of her prescriptions to makes sure that they are administering them at the right time and the right quantity. Of course they are not. One particular drug, Nuvigil, apparently is not carried by the hospital pharmacy and the direction I was given was to make the 45 minute drive to JDT and pick it up. I asked the pharmacist to order it and she said because it was on the weekend she could not. Another totally unacceptable response. They want me to leave Sherrin’s bedside because the pharmacist does not want to do the right thing. Because it is early in the morning I will have to wait a couple of more hours to get this issue corrected. Another day another temper tantrum.
The point to this entire discussion is if you assume that your family member is getting all the right care then you are making the wrong decision. If you do not check every aspect along the way someone will make a mistake. It has happened to Sherrin time and time again and not to listen to the family is the height of stupidity and arrogance.
Sherrin’s Next Journey Begins
Sherrin is coming home. She has made tremendous progress and we all believe she will thrive at home with her friends and family.
There have been a lot of ups and downs over the past year and a half, but we know our Sherrin is ready to return to Ashburn. There are so many people we have to thank. We will forever be grateful to Dr. Neil Jasey and the medical staff at Kessler in bringing her back to consciousness and providing the first real step on the road to recovery. Dr’s Fellus and DeFina have given us hope that there is a real chance for a complete recovery. Toni Loyas and the staff at JDT have been superb. JDT took Sherrin in after Kessler and brought her to the next level. The medical and rehab staff were absolutely wonderful and they did everything they could to make her comfortable and ease her through the recovery process. One would have to say that she became a member of the JDT family. The only threat I received was that we better keep her website up so that everyone can monitor her progress. We are extremely grateful and owe JDT more than words can express.
So how is Sherrin now? Cognitively I would rate her at 65% and physically at 35%. Her abstract thinking is starting to come back, she is very much aware of her surroundings and her personality has returned. Physically, she has good movement on her left side, can sit up without assistance, and has begun feeding herself. What is the end game? No one knows and all we can do is keep plugging away.
Before going home I have to thank Tom Baroody who has been Sherrin’s case manager from TRICARE since her 5th month of recovery. Tom is the model of compassion and friendship. Without Tom we would have been in much worse shape. Please do not pass any of these kind words to Tom. If you do, he will think I have a heart
Sunday is the first time we will be home as a family. I would ask her friends to come by and see her again. Your encouragement will be very helpful to her recovery and will significantly help her morale. The basement has been transformed into Sherrin’s new room and it has plenty of space to entertain her friends and family
Finally, and most importantly never give up and do not accept no for an answer.
Three months home
It has been just over three months since we brought Sherrin home. She is doing fine and continues to make slow and steady progress. The good news is that everyone is pulling for her and we are blessed that we have TRICARE and her case manager, Tom Baroody, has been forever her best possible advocate.
Thought I had everything coordinated before we left New Jersey. Boy, was I ever wrong. Sherrin was supposed to get in-home care as well as outpatient therapy. Pretty unusual and, as a result, the health care providers were not able to support. There was some stupid Congressional legislation that came out a few years ago to save money and it stated that monies flowing out of TRICARE can only go to one provider and everyone else had to be paid by the primary provider. Not one provider in Northern Virginia would accept this contract condition. You see, the rates for outpatient care is different than in-home care and when it is all said and done it is a money issue. “The hell with the patient show me the money”. We even tried to have her in-home care provider give her therapy at the house, but eventually we realized that for Sherrin’s ultimate recovery she needed out-patient rehabilitation. The funny thing is that everyone wanted to help, but even I understand they cannot operate at a loss. Luckily, because Sherrin was an adult when she had the accident she qualified for MEDICAID and we were able to get her in-home care through MEDICAID and out-patient care through TRICARE. I feel so sorry for kids with a TBI that don’t have the capability of using an alternative to their primary insurance. So now the majority of our time is dedicated to getting her from one appointment to another. Thank goodness we bought a wheelchair van and we now are pretty good at getting her in and out.
As Sherrin makes more and more progress more things happen to her body. Her swallowing is getting better and better and she is gaining more movement on her right side. We were able to get a recumbent bike that exercises her legs and arms through electrical stimulation and we will soon be getting another machine to stand her up. We have to exercise her body so that as she gets more and more control of her limbs she has the strength to do it on her own. How long? I would say another couple of years. Time is not important. The only thing that counts is recovery