No expectations but to pay for medical care

he is left quadriplegic and having to pay for rehabilitation expenses and 24/7 care out of pocket. Since insurance won’t cover 24/7 care and has denied most rehabilitation claims, my dad has been draining his retirement fund which will run out this summer. My dad is making progress and is capable of recovering, but it is a difficult and slow process. We have had many friends and family members reach out since March of 2022 about my dad’s condition and ways to help. We hope this gofundme can provide a source of information on my dad’s journey and a place for people to donate to his recovery, if they so choose. Donations are not expected, but we are appreciative of everyone’s support and interest in his story. A big part of his journey has been written by my dad using specialized eye tracking software below, with additional facts and edits provided by family.

THE FULL STORY

I don’t know what caused this illness for sure, but I think the event was based on a freak accident whereby I fell in my storage unit, and my clenched right fist hit my right nostril and tore or ripped the inside of my nose in mid-January 2022. That allowed the infection to enter into my body and resulted in me getting a serious staph bacterial pneumonia called MRSA. It came to a head on 3/12/2022.

Howard and Karen (my oldest brother and his wife) called me, and after talking with me, they realized that I was really sick and needed to go to the hospital. They recommended calling 911 but learned later I was still at home. Howard drove over from Gulfport right away to take me to the hospital, but I was not able to get into his truck, so he called 911. He saved my life by coming over to my house.

The following is a recollection of Howard and Karen’s account of my situation due to my medical problems and sedation medicines causing me with memory loss during the times before I left for Houston . My mom, Karen, and Howard were with me for 36 days straight taking care of overseeing my medical journey; COVID protocol was also in place. My daughters, Megan and Bethany, and my ex-wife, Judy, were also following up with visits and nightly checkup phone calls.

On 3/12/2022, I arrived at the ER at Fort Walton Beach (FWB) Medical Center via ambulance with the following conditions:

My blood sugar was 834

I was very short of breath due to pneumonia in my right lung after X-ray & CT scan confirmation

My electrolytes were way out of range (potassium very low along with magnesium being low)

I had pulmonary edema in my legs

The ER gave me fluids, antibiotics, insulin and tried to supply me with enough oxygen thru nasal cannula and masks but quickly realized I needed more supply than the ER could offer, so I was transferred to ICU to get on a ventilator.

On my way to ICU, my body was rapidly degrading to the point all my vital organs were starting to shut down, and I was no longer coherent. My Type 2 Diabetes and the serious staph infection were killing me. At that time we did not know about the MRSA until later after mucus samples were taken and analyzed.

They said that it was weird that I had MRSA because typically you get it in the hospital rather than in a normal environment. One of the doctors told my brother that I was on 100% life support, and if my body didn’t start fighting back and helping out in the healing process then I would not survive. He recommended calling all the family members to come and see me and that the next 24 to 48 hours were very critical.

They told my family that I was the sickest person in Okaloosa County. Everyone came to see me for a final time but God had another plan for me. I ended up in a coma on sedation and all sorts of medical equipment to keep me alive as my body was fighting back.

During my stay in the FWB ICU:

I received sedation for pain

I endured at least five intubation tubes (ET tubes) having to be removed and installed due to premature balloon deflation (on two of them), chewing on my tube without knowing it, and bronchoscopy procedures

My voice box was damaged due to all of this, and I later found out that it had partially paralyzed one of my vocal cords. I couldn’t talk, eat or drink anything and was fitted with a NG feeding tube.

Countless breathing treatments for my lungs and pneumonia

My kidneys shutdown and I had to go on dialysis. Eventually, after several weeks my kidneys were functioning again. (This was a miracle due to the fact I was only putting out 400cc initially a day but ended up with over 2000cc. The doctors were truly happy and amazed at my progress)

I was septic; the infection was in the bloodstream per culture results.

I also had a 106.7 degree fever and the arctic sun cooling blanket had to be used to try to bring my temperature down. (On 3/18/22, CT scan confirmed that I didn’t suffer a stroke or bleed in my brain and that I had no pulmonary embolism in my lungs. It is another of God’s miracles that my brain didn’t boil because you usually have brain damage from that high of fever but my brain is as good as it ever was…debatable I know.)

I went into AFIB during the first week but got out of it on 3/20/2022.

On 3/19/2022, one and a half liters of fluid were drained from around my right lung via a chest tube.

After the chest tube showed a slow down of fluid discharge, the Pulmonogists decided to do several chemical washes called TPA, Tissue Plasminogen Activator, to help clean and heal the outside of the right lung. I still had a small pneumothorax or leak, so surgery was needed to cure my lung issues. This would be performed later at Ascension Sacred Heart Hospital.

I suffered from critical illness myopathy (CIM) and polyneuropathy (CIP). This occurs in the ICU when patients are so sick that they can’t perform proper OT (occupational therapy) & PT (physical therapy) due to severe muscle weakness and nerve loss from being in a critical illness state. Even though the therapists worked on me, I was like a piece of wet spaghetti. I had lost all my feeling in my fingers and toes when they were poking me with a pin to check reflexes and nerve activity. Steve (my older brother) told me it was because my body died and it left me a quadriplegic with a bunch of dead or damaged nerves.

On 3/31/22 I had a tracheotomy; a procedure to make an incision into the trachea or windpipe. This allowed the ventilator to attach to the tracheostomy tube versus the ET tubes. Those were now removed from my mouth after being there for 19 days.

On 4/1/22 I had a PEG feeding tube installed to allow feeding and medications directly to my stomach. This allowed the removal of the NG tube from my nose. On 4/4/22 They also changed one of my antibiotics to Daptomycin which a few days later caused some serious side effects. More on that at Select Long Term Acute Care (LTAC) Hospital Section.

I was in the FWB ICU for a total of 26 days from 3/12/2022 to 4/6/2022. On 4/6/2022 I was transferred to the Select LTAC Hospital ICU unit.

The main objective was to wean me off of the ventilator and try to get my muscle atrophy under control with RT (respiratory therapy), PT and OT …regaining strength and muscle movements. The therapists were very good, but I struggled with my diaphragm muscle being so weak due to the CIM.

I was transferred to the ICU because of sedation medications, otherwise I would have gone to a rehabilitation room. I was still on a ventilator via tracheostomy. The weaning process was harder due to this particular type of staph infection, MRSA.

I was responsive to yes/no questions by nodding my head. On 4/7/2022 to 4/10/2022, I developed a red angry rash all over my body; it was determined that I was allergic to the antibiotic Daptomycin. I had to get on a different antibiotic called Cleocin.

On 4/11/2022, I developed a urinary tract infection (UTI) along with my lung infections. On 4/12/2022, I had to contend with pressure sores on my backside and head. Wound care was on top of it, but pressure sores are very hard to heal and long lasting. I dealt with this problem for over a year during my recovery process to date but still need to keep close tabs that they don’t redevelop due to my lack of mobility and myopathy.

On 4/19/2022, I transferred to Ascension Sacred Heart Hospital In Pensacola, Florida to prepare for my lung surgery. On 4/22/2022, the lung decortication surgery was performed, because the pneumonia made my right lung hard on the outside, and it couldn’t function properly due to a small hole in my lung allowing mucus and bacterial infection to enter the outside wall cavity surrounding my right lung.

The doctor described the surgery as a balloon covered with wax not allowing it to expand so it involved peeling the hard layer of tissue off allowing proper function of the lung. The surgery was successful and I remained in the MICU. Two chest tubes were installed during the surgery to allow proper drainage. On 4/27/2022, My two chest tubes were removed, and I was transported back to Select LTAC and admitted into a rehabilitation room with a tracheostomy collar.

On 4/29/2022 and forward, I had developed extreme muscle atrophy. My shoulder could be dislocated so easily if not handled properly during all activities. My Mom and brother had the nurses place a sign above the bed to remind the nurses and CNA staff about this.

On 5/2/2022, a Pulmonologist diagnosed me with Critical Illness Neuropathy. I was pretty depressed. I was also getting Speech Therapy (ST) as well throughout my time at Select LTAC. Swallowing tests and cameras were being used to find out exactly what my problems were with speech and swallowing. It was determined that one of my vocal cords showed a partial paralysis causing my speech issues along with my epiglottis muscle not working properly to direct the food to the stomach versus the trachea or lungs. I was aspirating on ice chips and water.

On 5/20/2022, I had another bronchoscopy to remove excess mucus from my lung and to culture for bacteria infection. This procedure was called Atelectasis. Test results showed I still had MRSA. On 5/25/2022, I saw a Neurologist who diagnosed me with CIM. I was also battling another bacteria infection called Acinetobacter; it is also very resistant to antibiotics.

On 5/28/2022, I finally was diagnosed with no MRSA. All protocols were relaxed for medical personnel and visitors. On 6/1/2022, I still didn’t have any speech.

While at the Select LTAC, I dreamed that I died four times due to an Oracle 7 bug. I guess I dreamed about an Oracle bug because I worked on Oracle databases every day in my old job. I think that this happened each time they took me off the ventilator which was four times. The last dream I remember is about 12 people in my room trying to save me after I crashed.

I remember that most of the staff were great (especially the rehabilitation staff), but there was one Respiration Therapist nurse who disliked me for not being able to breathe and for suffering through the respiratory treatment, so she used to drug me at the beginning of her shift so I was unconscious while she was there which meant no respiratory treatment, (deep suctioning and oxygen adjustments to allow the ability to breathe better).

On 6/11/2022, they finally got me off the ventilator, and I just had the tracheostomy. I was now able to use room air or wall supplied oxygen. I remained using the tracheostomy collar for the rest of my time at Select LTAC. At this time I was able to have a speaking valve installed in the tracheostomy collar to help promote my speech which was not active at the time.

Before I was having to look at charts and nod at letters and numbers as the only option. The speaking valve started slowly with supervision. Usually a few minutes, then a few hours, and finally daily. It was a difficult process as well due to limited air restrictions and my secretions. The speech therapist would start me with certain letters to pronounce and gradually advanced to a few small words. On 6/15/2022, I had another swallowing test that showed the same as before: paralysis and muscle weakness.

During the month of June 2022 I was involved with daily passive exercises, the Barton Chair, (a chair used to help my diaphragm muscle strengthen allowing more productive coughing to help eliminate suctioning), PT, OT, RT, and ST. Many chest X-rays were done checking my lungs for improvements in the infections. I had become very anxious as well. On 6/21/2022, they started using percussion therapy on me. This helped loosen the mucus in my lungs and allow me to cough it up versus a bronchoscopy to clean out my lungs.

During the last half of June 2022 my brother and my daughters were looking at many national and local facilities that would take a patient on a tracheostomy with CIM. This turned out to be a very difficult task. Insurance was pressuring Select to move me to a Skilled Nursing Facility (SNF) due to my slow progression of healing.

Unfortunately, most SNFs do not have continuous monitoring of vitals. This was not acceptable due to my lack of communications. I had no control of movements and no speech. During my previous tenure at Select LTAC, I had a call switch strategically positioned to allow my head nod to alert the nurses station that I had a problem. This was my only communication except for video surveillance.

After many phone calls, communications and with the help of my case manager at Select LTAC, we were able to get approval and insurance authorization to be admitted to TIRR Memorial Hermann Rehabilitation Hospital in Houston, TX. They were highly rated nationally and thought this is where I needed to be. Thank God for my girls and my brother, Howard, who searched the entire country and found one place that would take me with a tracheotomy and CIM, and for the Select Team for pushing me hard in my therapies to help me get into a good rehab facility.

Insurance wanted me out of Select LTAC because of cost and lack of progression due to my myopathy. The ironic thing is that Select LTAC was less expensive than the cost of TIRR Memorial, not to mention the flight cost. I was anxious due to having to be away from most of my family. Thank goodness for Megan’s willingness to be with me throughout my stay in Houston. And, Bob and Leticia McGuffey, who live in Houston, helped us (mostly Megan) both tremendously with all sorts of things.

On 7/6/2022 I was transferred by air ambulance to TIRR Memorial in Houston Texas. Megan came with me to Houston and stayed for eight months in a hotel room being my loyal caregiver and family support. The private flight to Houston had a $0.00 copay because of my condition. It was not considered an emergency but as a medical necessity due to my quadriplegic state and fragile respiratory status, so the flight company was very confident of being paid by insurance.

Insurance elected not to pay and to our knowledge they still haven’t paid. The flight company released me from any type of liability. Howard initially talked to the company before the flight and confirmed we would not be liable if insurance didn’t pay. This is sad but unfortunately these are the type of issues that arise constantly with insurance causing much anxiety and stress.

TIRR Memorial in Houston was really nice but they didn’t push me as much as Select LTAC did. When I arrived, I was in a stupor because they had drugged me on the flight to the point that I was non-responsive. During my stay, I got COVID and they moved me to an isolation unit and would not let me see Megan for ten days. This was very difficult for me because I relied on Megan to help communicate my needs to the staff and look out for me. It seemed like forever but Megan refused to leave Houston, so Nick (her husband) came to Houston. This was another major setback for my muscle weakness myopathy healing process.

While still in COVID isolation, insurance started denying my stay at TIRR despite still having higher care needs. I was discharged from TIRR Memorial to a Texas Skilled Nursing Facility since I was still too weak and medically fragile to travel home. The Skilled Nursing Facility I was discharged to was the only one in Houston that was willing to accept me due to my high respiratory needs. When we arrived at the SNF, I was put in a room with a COVID isolation sign–they had been using the room for COVID patients and placed me here despite testing negative, and I had a bullet hole in my window.. Within two days, I developed another infection and my O2 started to drop again, so I was discharged and sent to the Emergency Room at Houston Methodist. At the SNF, I remember that a nice lady (a Respiration Therapist) told Megan that she would not have her Dad in there, and that my needs were LTAC level. On the day of discharge, the SNF nurses agreed that I should be in a higher level of care. That really scared both of us because the insurance forced me out of TIRR Memorial and the hospital case managers took advantage of Megan being alone and young.

After 911 was called, I was taken to Houston Methodist Hospital, and it was crazy but at least I got an ER bed in a room due to my high medical needs. There were people in all the hallways in gurneys. We were in that ER waiting to be admitted and placed in a hospital room for around 36 hours straight. It was long enough to undo my progress and to reopen my head wound which I got from the original ICU stay.

Houston Methodist Hospital had some of the worst case managers unfortunately, they were aggressive and callous to Megan, taking advantage of her for being alone and young. The case managers told Megan that we had no choice in where we would be discharged to, and that they were going to send us back to the SNF we came from and that if we didn’t like it, we could deal with that once we get back there. Upon being told this, Bethany called the SNF and the SNF confirmed that they have had no communications with anyone from Houston Methodist regarding my case, and that we absolutely do have a choice. From there, my daughters and Howard worked tirelessly to get me into a rehab or LTAC facility - which ended up being Kindred in Sugarland, Texas.

Kindred was a blessing for the most part thanks to my girls for finding them. Each day was filled with pain and some of the CNAs were just mean as hell. One was changing my diaper and she flopped my leg off the bed and it hurt my hip, knee and my entire leg, so I started crying. She was so rough and screamed at me and said, “Shut up crying boy and that it didn’t hurt.”

I was so dependent on them that it terrified me. I did report it, but I was so scared of retribution for my actions because all the staff were very overwhelmed with 20 patients or more. Sometimes I had to stay in a dirty diaper for hours waiting on the one visit during their shift.

I remember one day that they changed my blood clotting medication to Eliquis, and Megan was just visiting with me when I coughed up a blood clot and was coughing up blood all over my chest and sheets. I thought that was the end but they called a code and got the bleeding to stop. I could see the dread on Megan’s face, and all I could think about was trying to show strength by saying that it would be alright.

I had the suction machine running 24x7 because I couldn’t swallow. While Megan manned the suction machine during the day, it was a very different experience at night. I had to spit out on my chin and chest and call the staff to clean me up. Kyle, on my PT team, rigged up the suction machine to an IPad stand to make me semi-independent when it comes to using the suction machine.

The PT and OT staff were outstanding. Fauch was really good at PT and helped me in moving my legs. Rameez did good work with my hands and arms. There was a really nice woman that coordinated all therapy sessions with me.

On 10/31/2022, I finally had the tracheostomy removed at Kindred. My PT and OT staff were great and they pushed me hard. On 12/2/2022, I was transferred upstairs to Kindred Rehabilitation for more frequent and aggressive therapies. This is where insurance denied the rehabilitation, and I was now on self pay being forced to utilize my 401K account.

The trip home was $18,000 out of pocket cost for the flight back to Pensacola, Florida. It was either that plane trip home or twelve hours in the back of an ambulance. It sucked being six feet and three inches and being shoved onto a six foot gurney, but I don’t think I could have survived the twelve hour trip.

I was discharged on 2/22/2023 to Pensacola, Florida. I was not able to go back home to Fort Walton Beach because of the lack of 24/7 caregiver services and home health availability, and to be close to Megan and Nick for my skilled nursing needs.

My insurance policy doesn’t cover CNA care or the apartment rent, but God provided the costs via my 401k account. It costs about $25,000 per month for CNA around the clock care. I still have to pay for an apartment (plus my house in FWB), various bills and insurance which makes my monthly costs close to $30,000 per month. I have made my final medical hardship withdrawal from my 401K. The funds will run out in June or July of 2024.

The CNA care is good and helps the PT and OT. God has performed many miracles and blessings in my life but He has been carrying me exclusively since this happened in March 2022. The miracles and blessings include:

I didn’t die

No brain damage from the fever

I got off the ventilator

I got into TIRR Memorial

I got into Kindred

I got the tracheostomy tube removed

My speech is improving

I started to eat and drink in November 2023 and the feeding tube fell out on 2/9/2024 (it was scheduled to be removed on 2/27/2024)

I now have slight movement in my feet and hands

My Type 2 Diabetes is resolved now without any diabetic eye problems from such high glucose numbers

I am off all prescription pain drugs with no addiction

I have the 401k account to pay through this summer

I have an IPad that uses my eyes to type and do clicks

Megan and Nick have been working hard to take care of me

Bethany and Bill (my oldest daughter and her husband) have helped by taking care of my financial accounts

Howard and Karen have helped both daughters stay on top of things and have brought Mom to Pensacola just about every month and also brought her to see me in Houston

Steve was able to visit me in Houston three or four times

Family and friends have been supportive with their time, money and prayers

All of my “local” Motorola friends came by to see me and, I had visits from my Motorola friends in Arizona, Georgia and Massachusetts

Bob and Leticia McGuffey who helped out in Houston

I am still a quadriplegic, but I am getting better. I thank God for each day and for all the prayers of family and friends. I am confident that there are more miracles and blessings to come:

Moving my hands

Moving my feet

Standing up and transitioning to a chair

Taking a shower

Getting dressed

Walking

Driving

Talking more clearly

I am sure that these will come to pass, because I have faith and time. In spite of all the suffering I have endured over the last two years, NOTHING compares to the suffering endured by Jesus on the cross.