Baclofen Pump Replacement

They discharged Brandon on April 18th, which was the next day, from the rehabilitation. By the time we got home we immediately went to see his PCP because he could hardly breathe and was so sick, when we got to the doctor his oxygen saturation level was so low that he called 911 to come and get him. They took him to the nearest hospital and admitted him at once. The rehab/hospital had discharged him with pneumonia! I kept telling them he was wheezing and they wouldn’t listen to me. The doctors at the hospital couldn’t believe the rehab hospital discharged him in that condition! Sometimes the doctors are just so bull-headed and they think we are all hypochondriacs!

He finally got better from the pneumonia and the hospital discharged him after a week.  During his hospital stay his doctor that was managing his pump called me and said she thought there was a problem with the pump because of how high the dosages were and we were still not seeing results and he was so sick and vomiting.

They ordered a flow study to follow the medicine going through the pump into Brandon’s spinal fluid. The flow study was finally done on May 2, which is exactly 1 month since his “flu like symptoms” started. When they tried to push the medicine through the pump it wouldn’t go, so they realized that there was a kink or some kind of problem with the catheter. They scheduled Brandon for surgery to replace the pump on May 15th, so here we have a pump that’s not working and they wait 45 days from the time of the first symptoms and 15 days from the time they diagnose that the pump isn’t working?

Pump failure may cause an overdose or underdose of intrathecal baclofen. The signs and symptoms of an overdose include:

  • Drowsiness
  • Lightheadedness
  • Difficulty breathing
  • Seizures
  • Loss of consciousness or coma

The signs and symptoms of an underdose include:

  • Increase or return of spasticity
  • Itching
  • Low blood pressure
  • Lightheadedness
  • Tingling sensation

Following are possible device complications:

  • The catheter or pump could move within the body or push through the skin.
  • The pump could stop because the battery has run out or because of component failure.
  • The catheter could leak, tear, kink, or become disconnected resulting in an underdose or abrupt cessation of intrathecal baclofen. An abrupt stop of intrathecal baclofen can lead to:
  • High fever
    • Altered mental status
    • Returned spasticity
    • Muscle rigidity
    • Death, in rare cases

I am sure you can understand my extreme worry and frustration considering the above signs and complications of pump failure. Why is it that the doctors aren’t more concerned about liability or better yet the well-being of their patient?

EAR/Extended Acute Rehabilitation

 When Brandon recovered from his brief coma and respiratory failure he was ready for the acute inpatient rehabilitation.  In the benefits book these benefits are called your EAR benefits. He was admitted and was receiving therapy, physical, occupational, and speech. The problems continued medically which interfered with his rehabilitation. He continued to have periods of respiratory failure and non-responsiveness. The doctors did CT scans and MRI’s and came back with no answers, again! He would wake up and be fine, back to his baseline with no explanations. It was so frustrating because I didn’t know what was happening, but deep down inside knew that it had something to do with the Baclofen Pump.

Though Brandon was getting his therapies while in the acute setting of rehabilitation the therapists weren’t willing to push him, it seemed as though they would come to the room late to get him and bring him back early with the excuses that he didn’t want to participate. Are you kidding me, he has a brain injury I would say! I knew just from working with him myself that I had to constantly be mixing it up and keep light on my feet in case his attention span wouldn’t last. I went to the Learning Store and bought wooden puzzles of the alphabet and numbers as well as erasable white boards and pens, magnetic letters and numbers, large-sized wooden USA state puzzles, this was a way I could continually push him even when the therapists weren’t working with him. I knew from his benefits book that all he would get of this acute inpatient rehab was 60 days so I needed to be his advocate and maximize his time and learning.

Brandon was constantly being set back because of the medically unexplained periods of non-responsiveness and what seemed like flu symptoms. By this time it’s mid April and the doctor kept increasing the amount of Baclofen he was getting through the pump, but we were getting no results on the increased doses. After 18 days of being sick, not wanting to eat and vomiting they just kept saying it’s probably the flu again. The morning before they discharged Brandon he seemed like he aspirated and within hours started wheezing and having difficulty breathing. I kept telling the nurses and finally they got orders to do a breathing treatment, but no x-rays.

Education on Advocacy

I am going to take a break from the story just for a moment so I can share some very challenging things that are going on at this time with one of the families that are desperately trying to come to Phoenix to get rehab for their son, who has a traumatic brain injury.

The mom is in need of resources and help in order to get her son who is Medicare primary into Neuro Institutes program. The challenges are that he needs 24/7 care, basically skilled nursing or group home, the other challenge Medicare won’t pay for both. The family has no money to be able to pay privately for a group home. They are caught in the middle of the system, a system that isn’t fair.

 I have been Facebooking back and forth with her as well as many others and the comments are both positive and negative. I am trying to keep the cup half full so that good things can happen. When people on Facebook comment they don’t realize how their negative comments feed the fire of negativity. It isn’t fair the way our healthcare system works but until you learn to advocate in order to beat the system you will butt heads with it constantly.

One has to learn how to write letters of medical necessity, appeal letters and make phone calls without getting discouraged. Remember it’s the squeaky wheel that gets the oil. Quit worrying about if you are bugging someone or not. All the doctors, nurses, and administrators knew me by name and Brandon and though they got frustrated because I was relentless I did get what I needed and wanted for the most part. I also dedicated myself to not allowing the negative in, the word NO didn’t and still doesn’t exist in my vocabulary, nor does the word false hope, or plateau!

Stay positive and never give up, there are people who help other people because they care. Our society is much more considerate than anyone gives them credit for. They don’t help because they want something in return; they do it because it makes them feel good being able to add value to someone else’s life!

Baclofen Overdose

On Feb. 13th Brandon had his first Baclofen pump refill. In the evening he started to become very lethargic and non-responsive, I called 911 and he was in respiratory failure, he was rushed to the hospital. The first thing the neuro surgeon said was it could be a Baclofen Pump overdose. They had to put him on life support and he was back into a coma. They gave him Narcan which is a drug that will reverse the effects of an overdose. By 3 am he had woken up and was starting to respond again. The doctors discharged Brandon by the next morning and told me to follow up with the doctor that was managing the pump. When I got the pump checked all they did was place a machine over it and said “It is working fine.” I hadn’t done all my research to be knowledgeable enough to know any difference other than what my intuition was telling me, and what the Neuro surgeon had diagnosed him with while in the coma. This is leading up to a whole new can of worms that caused so many problems down the line.  

Here is a summary of all the medical mistakes and negligence that went on from the time Brandon had his accident.  #1 they never assessed the inside of Brandon’s mouth during the initial trauma, #2 when the plastic surgeon did the lower mandible repair he again never assessed the inside of Brandon’s mouth before placing plates and screws in fractured teeth! #3 the doctors wouldn’t listen to me when I kept saying his teeth are broken after the wires were removed from his jaw and I was requesting a dentist or oral surgeon. My point is I allowed them to add the Baclofen pump against my better judgment instead of demanding that they follow through with getting an evaluation of his mouth! The key is to educate yourself!  I look back and wish I would have educated myself, instead of being educated through the mistakes that were made that could have been avoided.

Baclofen Pump installed

 In November of 2001 the neuro surgeons installed a Baclofen pump into Brandon.  After he recovered from the surgery the doctors and insurance companies were in a big hurry to discharge him even though he was still having fevers of unknown origin and what seemed to be pain. I fought to keep him in the hospital and even threatened that if anything happened after discharge that they would be held responsible.  I also wrote a letter to the head of the hospital of all the problems we had and how dissatisfied I was with the way they were disregarding Brandon’s ongoing symptoms. The heads of the hospital came and spoke to me and the next thing I knew we were being discharged, without any consult from the dentist or oral surgeon they had on call at their hospital! I was so angry and frustrated I didn’t know what to do. I told them I wouldn’t leave and they told me that I would be responsible for the bills from the next day on, so I took Brandon and left!

Within days of leaving the hospital I found an oral surgeon that would see Brandon, when we got to his office he tried to accommodate us but because of Brandon’s inability to sit straight up and hold completely still they couldn’t get the oral x-rays they needed to diagnose his teeth. He referred us to another oral surgeon that treats people with special needs. She saw Brandon in the hospital under a general anesthetic and when she came out of the operating room and sat down beside me she confirmed everything I had known from the time the fevers started. Brandon was completely septic as well as his teeth were severely broken and infected that he had to have 9 root canals,  2 teeth extracted and several crowns needed; $23,000 later! It was going to take 3 surgeries to complete all the work, and overnight hospital stays each time as well as him having to undergo a general anesthetic each time. She told me the cause was because Brandon’s mouth had never been evaluated and teeth never examined before the oral surgeon fixed his jaw.  The hardware (4 plates and 16 screws) to fix his jaw is what caused most of the infection along with the broken teeth that had abscessed.   So after the first surgery Brandon started getting better! He even was able to eat applesauce and yogurt. After each surgery he continued to make progress.

Wrong diagnosis leads to unnecessary surgery

 In my last post I spoke of all the different surgeries Brandon had to have. The one I am going to focus on is the jaw. One would think that with his jaw being broken as severe as it was that the trauma doctors would have called in a trauma oral surgeon, but this never happened. Brandon’s teeth were never evaluated for fractures and broken teeth. When they did the surgery he had 4 plates and 16 screws, and then they wired his jaw shut for 4 weeks. After the wires came out of his jaw and I was doing his oral care I noticed he had multiple broken and chipped teeth. I called the doctor in and told him I wanted an oral surgeon to look at his mouth, I felt that the fevers and what seemed to be pain were being caused by the broken teeth. Now take into consideration that 2 months had passed.  This was enough time for infection to have set in.

I am telling you this because it is significant to what led up to an unnecessary surgery. Brandon was discharged towards the beginning of October. When the doctors finally readmitted Brandon after several emergency room visits it was towards the end of October. Brandon should have never been discharged. The doctors told us that he was having fevers of unknown origin and they felt it was a side effect of the brain injury called dysautonmia; basically this is a shutdown of the autonomic nervous system. He also was having severe spasticity which was causing his CPK to sky rocket off the charts which can cause a critical condition. CPK is creatine phosphokinase in the blood, this is an enzyme found mainly in the heart, brain and skeletal muscle. The doctors convinced me that he needed to have a Baclofen pump installed which would help calm the spasticity and bring his CPK down; the surgery would help to stabilize him. I was still fighting with the doctor to get a dentist or an oral surgeon to come and evaluate his teeth, but he kept telling me that dentists don’t come to see patients in the hospital. Deep down inside of me my intuition was telling me that the reason Brandon was having fevers and spasticity was because he had infection and so much pain in his mouth from the broken teeth. I was scared so I allowed the doctors to convince me to allow Brandon to have the surgery against my better judgment.

I will continue more of the story in my next post. I want to make you all understand how very important not only your intuition is but your voice. It is imperative that you don’t allow the doctors to convince you to do something you don’t feel you should do. If you have concerns…fight, fight, fight and make sure that all your concerns have been addressed and taken care of. Do your homework, call the dentists or oral surgeons yourself and explain the situation, of course that applies to my situation but use what I am telling you to apply to your own situation. If I could do it over again I would have never allowed them to install the pump and I would have made it happen to have a dentist or oral surgeon see him in the hospital before they ever discharged him the first time.

Medical Mistakes or Negligence

Medical Mistakes

In my last post I negated to explain that because of Brandon’s critical condition they weren’t able to do any of the surgeries necessary to fix the lacerated liver, his jaw or his hand, they had to wait until he was stable. None of us knew when that would be, and I know it may sound stupid but I was so worried about the other injuries being fixed. The doctors waited 10 days to take him to surgery for the jaw, liver, tracheotomy, and J-tube. He ended up developing abscesses in his teeth because when the trauma team was working on him they neglected to call in an oral surgeon to evaluate inside his mouth. Since his lower jaw/mandible was fractured so severely one would think that his teeth would have been broken/fractured as well. Now don’t get me wrong I understand that they were concerned with getting his airway clear and on life support but their jobs are to evaluate the entire body and treat each patient like they will live or at least they should! The trauma doctors evaluate the patient and then they call in the specialists in each field to stabilize. So why wasn’t an oral surgeon called in? Doctors are human they aren’t Gods and they make mistakes, the problem is this is why there is so much malpractice and negligence. Had the doctors done what they were supposed to do, Brandon wouldn’t have had to go through all the infections, misdiagnosis, and extra surgeries that he went through. There were 3 months of suffering and procedures that were done that didn’t need to be done had he been properly diagnosed.  

After the surgeons repaired his liver and jaw and put in the tracheotomy and J-tube they had to wait until he was stable again before they could operate on his left hand and wrist.  We waited another week before they did the first surgery on his hand, by the time they operated the bones were already starting to heal so again it was very complicated and took multiple surgeries to fix the hand, which by the way has been permanently impaired. Brandon was finally weaned off the ventilator after 3 weeks, however complications arose once again and they ended up having to put a shunt in his right ventricle because he had hydrocephalus.  I had been complaining to the neuro surgeon that his cognition and his ability to follow commands had decreased, the doctors just kept saying it’s because the brain injury is so severe. This is why it is so important to be an advocate and never be afraid to tell the doctors what you think. I demanded more tests more CT scans MRI’s whatever it took. Like I said in my earlier paragraph doctors aren’t Gods and they aren’t there 24/7 like I was, which is why they don’t see the ups and downs.

I fought to keep Brandon in the hospital however he was discharged way before he should have been. We ended up back in the emergency room 3 times before they finally admitted him again; this is when the nightmare started again.

I will continue with the story in my next post. I want to sum up how important it is to be by your loved ones side or at least have someone there that knows him or her well. When someone is in as critical state as Brandon it is so important to watch for signs of responsiveness because you know what to look for. The nurses don’t know your loved one like you do. Fight for your loved one; don’t be afraid to speak up because it could make the difference of how they come out of this or if they do!

Surviving a Traumatic Brain Injury

Arnie and I were in the medical field of neurological rehabilitation and our son Brandon worked for us. Who would ever think that what you do for a living would become your worst nightmare. I remember the night it happened, I felt like I was in a dream or state of limbo. By the time we got to the hospital Brandon was already in ICU, in a coma, on life support and in critical condition. The doctors told us he wouldn’t survive the night. The first thing Arnie asked was “Is his spine clear” meaning does he have a spinal cord injury. We were given no answers of any kind other than he probably wouldn’t survive the night and they weren’t sure of all of the injuries. A broken pelvis, broken right hip, fractured lower mandible (jaw), lacerated liver, crushed left hand with multiple compound fractures, as well as some kind of head trauma and was in a neck brace. I really don’t even remember sleeping that night. We stayed in ICU the entire night. The next morning the Neuro Surgeon called us into that private room (never a good sign). He explained that the fact that Brandon made it through the night was significant but if he survived he would be a vegetable for the rest of his life. He explained to us that he suffered a traumatic brain injury with bleeds throughout his entire brain, the diagnosis was Diffuse Axonal Injury, DAI, similar to shaken baby syndrome. The doctor went on to tell us that the survival rate for this type of brain injury was very low.

Arnie and I knew what we needed to do and that was to prevent pressure wounds, atrophy of the muscles and foot drop (dropping of the forefoot due to muscle weakness, causing the person to drag the front of the foot while walking, not a good thing!) So I went to a sports store and bought a good pair of ankle support hiking boots. We rotated them on and off his feet in order to prevent any pressure points from developing. I stayed by his side 24/7 and made sure that he was being rotated a minimum of every 2 hours, I also requested a low loss air mattress which allows airflow to constantly alternate throughout the bed from head to toe.

After we felt we had done what we could do to help prevent further damage (and the doctors would allow us to do), trust me there were some heated discussions on what we were doing, then came the down time and reality set in. The hours seemed like days and the days seemed like weeks. Our family was there with us in ICU as well as very dear friends some of which were doctors who were a great comfort to us and answered many of the questions we had that we weren’t getting answered by Brandon’s doctors.

I remember about the third day in ICU my sister came walking in with big poster boards, fancy cutting scissors, glue sticks, pictures, and markers. I asked her what all that was for, her answer was, “When Brandon wakes up he needs to have visual stimulation and reminders of his life before the accident and it needs to be of family and friends.” She also stated that it would be therapeutic for all of us as it was doing none of us any good just sitting there waiting and worrying! She told me to go home and sit down and dig out photos of friends and family, Brandon in his younger years. Cathy told me to get as many photos as I could gather because we were going to be making big poster sized collages then we would get them laminated so he would have them always. Leaving the hospital was the last thing I wanted to do, but knew in my heart I needed a break, so my daughters all came with me and we spent a good 3 hours going through photos and gathering them together to bring to the hospital.

When we got back we all sat on the floor of the ICU, I felt like our entire family had taken it over. I have to say that we actually laughed as we put the photo boards together and reminisced about old times. This project took all of us over a week to do and it helped ease the worry and pain of not knowing what was around the next corner for Brandon. One of the Social Workers’ also came up with a great idea on the second day that Brandon was in ICU. She told me to get a journal and just start writing… All my feelings, how the accident happened, what was happening on a daily basis with Brandon’s recovery, just journal she said.  I took her advice and literally started writing from the time I awoke after a few hours rest until I fell asleep. I wanted to be able to tell Brandon everything that happened and in detail. What I didn’t realize at the time was I was journaling everything from the exact time a nurse would come in, what she would do, and what the results were, these journals became my sanity. They also came in handy later, which I will later go into more detail. 

My point with telling you about the first couple of weeks while Brandon was in critical condition and in ICU and not knowing whether he would live or die, or ever wake up out of his coma is that you have to find something positive to pass the hours as you wait. When they wake up they will need to have visual reminders of their life before the accident. Do you know that 10 years later we still have every one of the photo boards and still use them to this day as part of his therapy?  There is so much more that we did medically, which I will tell you about in my next blog.

Thank you for reading and please feel free to share your stories and comments, we all are in this together. God bless you all and until next time… Never, Never, Never Give up Hope!

Cari Fonseca

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