Thomas Berg

Mercer Island, WA

Northwest Catastrophic Injury Fund

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Help Thomas regain independence!

Thomas Berg, age 34, sustained a severe cervical spinal cord injury resulting in total paralysis. He fractured C3, C4, C5, & T2 vertebrae and diagnosed as “quadriplegic”. He can only move his arms upward but no use of legs, hands, fingers, or wrists both sides. He has no capacity to sit up without any core strength. Thomas has not either eaten or been able to drink liquids from mouth or been able to speak for over a month in Surgical Intensive Care Unit, San Diego since 03/11/2023. He has a swallowing disorder (dysphagia) that could have food or liquid flow into his lungs. He lost over 30-pounds in 5-weeks. Intubation for 20 days occurred and now has a tracheotomy and vent into his lower neck to breathe. Thomas was evacuated via Lear Jet medevac from La Paz, Baja Mexico where the freak accident on a hammock occurred. He did not incur a brain injury and fully aware.

Thomas underwent a 10-hour surgery to stabilize his spine from upper neck to mid spine, an 9-level vertebral fusion. Since then, he has undergone several other procedures and battled pneumonia, now on a ventilator. One cannot talk with a ventilator so one suffers in frustrated silence. Once able to breathe without oxygen support that has been obtained, the goal is a return by specialty flight back to Seattle’s University of Washington Spinal Cord in-patient rehabilitation.

Unfortunately, his health insurance was basic and the cost of care is enormous. Christopher Reeve Foundation lists $184,000 first year costs and 2.5 million lifetime costs for a 50-year-old 4.7 million for a 20-year-old.

The expected long-term needs include wheelchairs, wheelchair van for transportation to and from doctor’s appointments, modifications to bathrooms, and other parts of the home. Health plans do not cover these items. The first 90-days is considered the most important to avoid infections, skin breakdowns, and general body stabilization. Time is of the essence.

Together, we can do so much to improve Thomas’ prognosis. Thomas is extremely motivated to begin his long rehabilitation journey. Your financial support will not go unnoticed. We are grateful for your assistance and kindly ask that you share this with your key contacts or social networks and religious organizations.

We have engaged “HelpHopeLive.org” which is a 501 © (3) non-profit Charitable organization. The distribute all funds to providers directly. Contributions have no personal gain to others than to Thomas direct needs. HelpHopeLive.org distributes payments as a third party. Based on your financial profile, the funding as a charitable deduction can allow IRS deductions. Your tax professional should be contacted for advice for your unique situation.

Family and friends of Thomas Berg are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Injury.

Thomas has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!

May 30, 2024

It has been since August that Thomas returned home from Harborview Medical Center. His mother, Betty Berg, is the primary caregiver and me #2. We have a full time live in also. It takes three to care for Thomas. He has never regained ANY finger movement, just limited wrist flexion-extension to operate a power chair. Mostly, he is in bed 18-20-hours/day. Imagine not being able to perform the simple action of feeding yourself, brushing your teeth, using a Cell phone that requires simple pressure onto the screen with any finger. I drive Thomas to many appointments in a wheelchair van I purchased, dental (had four crowns installed after cracking 4 in the injury). These are self pay, no insurance. All travel and lost time on me and Betty. We have never had time off in 13-months now. The stress on daily life is incredible. 24 x 7 care is difficult to grasp unless you have personal experience with family or friends. The "hope"now is to start a Clinical Trial at the U of Washington, using nerve stimulation and cardiovascular exercise to try regaining finger and hand function and exercise to better manage blood pressure regulation lost in spinal cord injuries. We take for granted the spinal cord does its JOB continuously to death without a break. When damaged, it is an instrument completely unreliable, giving information often unrelated to reality. For example, it can be 70-72 F and he feels cold or sudden high or very low blood pressure we measure most daily or more. The trial is to start in June 2024 and end by November 1 or so. It is only for Quadrapligic patients. Thomas has regained weight from a low of 125 to 173 now at 6 feet 1". He has a good appetite. Most of the time he watches You-Tube videos, Netflix or related using a voice activated IPAD and new Sony TV. We bought a bed that is also voice directed for lifting or lowering either head or feet and vibration. A voice tube is next to his head to control this bed function. Caregivers are difficult to find unless you pay $120,000 per year out of pocket. People do not often respect the demands and skills and emotional demands of caring for seriously impaired individuals. This HopeHelpLive has really saved me from gutting my 401K I have saved for my and wife's "old age" that is creeping up at a fast pace. Again, I cannot properly express my gratitude for those who have contributed at any level. Thomas's injury is really a "life sentence" of total dependency unless technology or medical science can truly help paralyzed patients. It is nearly Summer, 05/30/2024. John Berg

February 22, 2024

It is now 11 months post injury 02/20/2024. Thomas has been living at home with me and Betty and a live-in part time caregiver. We have a 5 bedroom 3 bath home so space is available. The media room is now a small "clinic" with custom bed that is voice operated to elevate or drop both head or legs and has a massage/vibrate mode. The room is facing Lake Washington as it is a waterfront home. Our family in total has profound changes. My daughter, Alison, comes regularly and provides haircuts, toe/fingernail trimming, bathing in a wet shower wheelchair as the bathroom had the tub torn out and a a flat access and hand held water controls changed. The wheelchair van works well. His electric power chair weight is 420 pounds alone. Thomas is now at about 160 pounds, normal for his old 6 foot 1" frame. He eats well and no swallow function damaged. His left wrist works in flexion and extension sufficient to operate the power chair. We are constantly scheduling and going to medical appointments. He fractured four teeth on the injury when no cavities existed. Three crowns were required to repair molars and the front incisor a cosmetic repair. These are all out of pocket costs and most crowns are $1,000-$1,200 each. We go to occupational or physical therapy each week or urology for changes in his now Subpubic Catheter. That surgery was good to not use a foley catheter which was removed. The new Catheter is twice as large around so urine flows much better and less mess and UTI's no occurring now. I have learned how to remove and replace under extreme sterile conditions. It is more complex than one may think to just maintain urine flow and bowel movements. I won't get into that further. Thomas spends most time in bed watching Netflix, You Tube or Prime Videos. He can call using a voice activated iPad and use the new TV by voice also to change channels independently. Last month we interviewed for a Clinical Trial for electro stimulation at the University of Washington. The spring program is intended only for QUAD patients and to try regenerating some upper extremity function. Again, Thomas cannot move ANY finger on either hand. Just a little wrist motion bilaterally. Image that! We have to feed him, brush his teeth, move him onto the bed/chair with a Hoyer Lift and straps. He cannot even remove or pull up/down on blankets so he calls at any hour of the night or day. Sleep is terrible for us. Betty is doing the most work. She is overdoing it. We can't find a second qualified caregiver as he has Candida Auris and has no cure. This new fungal disorder can kill those with immune compromised conditions like organ transplants. Also almost all caregivers are foreign born often no English skills or a bad fit for a young man to spend days on end with. I have observed that most people just do. not have any real idea on the amount of care required and will always need unless some remarkable change occurred. The donations to date have really helped and provided some of the items illustrated above. Thank You ! John F. Berg

December 13, 2023

Holiday Letter of Appreciation & Gratitude

John & Betty Berg. 7222 East Mercer Way Mercer Island, WA 98040

The Berg family has been blessed by so many decades of ongoing successes and friendships. The momentum established seemed to create a never-ending series of sunny blue skies, health, and financial stability. None of us, John, Betty, Thomas, Evan, or Alison had any serious injuries or illness, just normal issues of aging and childhood and teen challenges for the three “kids” now 31, 32, and 34.

Lloyd Bridges had an old 1958-61 show called “Sea Hunt”, his son Jeff Bridges. Jeff got his acting start with his father on the show at age 8. Every show had a lesson. The lesson started when Lloyd said, “And then it happened!” Well, on March 11, 2023, everything profoundly changed in our lives.

Thomas incurred a multi-level spinal cord injury at our house in La Paz, Mexico on 03/11/2023. The diagnosis is: C3, C4, C5 and T-2 vertebral fractures, complete quadriplegia. A large cement pole designed for a pergola he hooked up with a hammock, fell onto his head/upper back. He underwent a ten-hour spine surgery in San Diego/Hillcrest trauma hospital to fuse nine levels of his spine with screws and metal internal fixation. The net result is no fingering or grasping function on either hand. Think about that loss alone. No feeling below the chest. No stomach muscle tone to move, turn, or roll even in a bed. And of course, no walking or bladder/bowel function. Thomas is now 100% dependent on others. He requires round the clock care.

The night of the injury, seeing him in a Mexican E.R., I called a San Diego Medivac company and had a Lear jet fly to Mexico to return to the USA for immediate surgery. I flew with Thomas, a flight nurse, medic, and the pilot. A small apartment was rented next to the hospital from March to end of May and I saw him daily to fully understand what this condition requires for treatment(s). It was as if I was in a medical training internship for spine injured patients. One quickly realizes that an “advocate” is key to proper treatment on serious conditions and months of hospitalization. Thomas’s brother, Evan, took off about 5-weeks of his career and flew in from Spokane and stayed with me. Visits from his sister, Alison, and special friends from Arizona, California, Washington, Nevada, etc. came to San Diego to see Thomas, often unable to even speak. Betty took care of business and homes in Mexico and Mercer Island and later came down to San Diego. Thomas also acquired a fungal disorder, called “Candida Auris”, and finally returned to Harborview Medical Center for another two months in a spinal cord program, now home in a modified house. We have a full-time live-in Caregiver, yet Betty performs most services, me as backup, driver, scheduler, complainer, and negotiator with complex never ending insurance, supply orders, and medical care providers. We purchased a wheelchair van, modified our walkway and one bath with roll-in wet shower. Every day was semi-controlled chaos. Thomas now can move his wrists (flexion/extension) but is very weak, though sufficient to operate a power wheelchair with a left side vertical toggle. Most of his life is remaining in a custom bed and a few hours in his wheelchair daily. Outings are mostly medical appointments and three urgent ER visits for UTI’s and urologic complications. Medical treatments never end. Medial stability is not part of paralysis. It seems every week we are at the Harborview clinics or University of Washington Hospitals. My phone is filled with continuous appointments or orders of medical supplies. Our homes 3rd/bottom level looks like a medical clinic.

The good news is he had no obvious brain damage, despite a large gash on the top of his head and after being intubated six weeks. He was on a trac tube for oxygen supported breathing for several months. Finally, he could breathe without external oxygen support, the trac and G-tube (PEG tube) holes in the throat and stomach healed. He speaks clearly now. His swallow function regained and can drink and eat normal food after tube feeding with liquid “nutrition” for months. His weight dropped to 125 pounds at 6 feet 1”. Imagine not eating for several months or not even the ability to talk for months. He quit smoking, using nicotine patches for 6 months+, an extreme method to consider for smoking cessation. His daily view of the world or perspective was mostly starring at the white ceiling of hospitals limited to 10 x 20 feet.

2023 tuned out to be our biggest challenge year so far. This year is I was diagnosed with prostate cancer. I finished radiation treatment six weeks ago called “Cyber-knife” at Swedish Radiation Oncology. Follow-up is by January to see if it was successful.

I want to personally send a sincere “Thank You” for the amazing generous financial support many have given without asking to Thomas’s Helphopelive.org campaign. Phone calls of support and concern were heart felt. The money has been used solely for his immediate needs not covered by a minimal health plan. If you don’t know what this is, it is similar, but not the same, as GoFundMe. The Helphopelive.org is a charity 501 © 3, IRS approved charity donation that offers tax deductions for contributors, GoFundMe rarely does. The Christopher Reeve Foundation listed the average first year cost is $184,000 and millions over a lifetime. In 8 months, spending over $125,000 was easy, even buying a used wheelchair van with lift system.

I stopped working for several months, only filling in on previous commitments. Betty works many hours per day, around the clock and we really do not know what is to follow. Thomas must be “turned” on 2-hour intervals to avoid pressure ulcers on his skin. This results in continuous sleep deprivation, mostly Betty’s. 2023 has become a strange, complex and challenging adventure. Two weeks ago, a meeting at the U of Washington was made to interview for a clinical trial in spring. The trial’s plan is to use electro-stimulation for quadriplegic patients and determine if they can restore some upper extremity function. It is hopeful that someday, advancing biomedical technology will assist in Thomas capacity for more independence.

The lesson(s) we are learning are yet to reveal themselves fully. Our family did come together in ways unknown before. We have witnessed actions of many generous and thoughtful people, many that I have never met. The most support was from my professional peers all over America related to my career now at 46 years’. I now can assist or mentor other families in need of guidance when a tragedy strikes, as there is no map or standardized guide to follow, only support and listening from others that have walked through the fires of profound change.

An old Buddhist saying appears relevant, “When the student is ready, the teacher will appear.” This has occurred numerous times already.

Author, Curtis Tyrone Jones, quoted “Somedays punch us in the gut so hard it seems we can feel the whole universe gasp with despair.”

JOHN F. BERG. 206-852-6559

If you see others that need help, consider tax deductible donations, based on your financial situation, with: Hopehelplive.org. A 501 © (3) charitable organization.

EIN/Charity ID 52-1322317. 1-800-642-8399.

2-Radnor Corp. Center, Suite 100 Radnor, PA. 19087

The link to Thomas’s campaign is: https://helphopelive.org/.campaign/22050/.

September 15, 2023

Thomas obtained his own power wheelchair. The rental was returned. The new one has a left toggle control that is sensitive enough to operate the machine. His left wrist moves (flexion/extension) sufficient but not much strength. No finger movement on either hand. We have hired contractors to re-do the width of our walkway into the home and change degree of slope. The wheelchair weight is 350 pounds alone so if he fell off the sidewalk, it could be a disaster. We have taken Thomas to pet store with his dog, "Nate", the park for running his chair and getting fresh air, multiple doctor appointments and restaurant trips.

The foley catheter was changed to a larger diameter. He had several incidents of Autonomic Disreflexia (AD) where the body blood pressure increases to dangerous levels and requires use of nitro cream. Two trips to ER before the foley was increased in size. Plans are now for a sub-pubic catheter in late October. Thomas is about 45 pounds now and was down to 125 at 6 feet 1 before he could eat "real food", not just liquid nourishment. Scott is our full time live in Caregiver but Betty is a full time mom/Caregiver who never ends her day. I am starting to work again after almost 5+ months not taking any new case assignments. We have spent an amazing amount of time and money to get this far. The donations are truly necessary as many items are not paid by his minimal insurance plan with United HealthCare. I applied for Social Security 5.5-months ago without even a letter from SSA. Thank you for reading this and supporting the efforts of the "new normal". JB

August 6, 2023

It is 08/06/2023. Thomas has been released to home 9 days from Harborview Medical after about five weeks in-patient. Unfortunately, his Candida fungus infection (from hospital in San Diego) reduced use of any physical therapy gym access. His PT care is minimal, actions I can do for range of motion, legs, hips, arms, shoulder and some simple strengthening exercises. He has gained about 12-14 pounds since eating regular food for over two weeks.

Thomas has a power wheelchair that is used now around a deck off our home and had one trip to the local park to ride around, get some fresh air and enjoy nature in summer. We found a nice used wheelchair van on 08/04/23 for $34,000. New ones cost $65-$100,000+.

We have a full time live in Caregiver; it does take 3-people to assist Thomas on a continuous care commitment. Again, his only function is non dominant left wrist, no finger actions on either side; he can raise his arms both to shoulder with bicep. The problem now is the biceps overpower loss of tricep and cannot extend his arms out unless we do it manually. A brace is attached for a couple hours to keep this from being a permanent contracture problem. Thomas had a foley block his urine flow resulting in a ER visit to HMC as his blood pressure spiked 159/122. This phenomenon is called Autonomic Disreflexia (AD) for short. Urine/bladder, bowel or infections trigger this "flight or fight" body reaction like a Tiger is chasing him. It is almost 5-months post injury; Nobody could really understand the continuous issues, treatments required, and focus one needs for a quadriplegic. We have a hospital bed and Hoyer lift to transfer him with three of us doing this. Everything is slow motion, detailed and we chart like a nurse all activities, prescriptions, observations, multiple blood pressure tests per day, water intake, etc.

JOHN BERG

July 14, 2023

It is 07/14/2023. Thomas had his TRAC removed at 12:00 today. A bandage over the hole in his lower neck. The good news is he can eat normal food just the last few days and drink "liquids" from mouth. The cervical collar is off. The other big step i he just started to use a power wheelchair using his left wrist. The right dominant side really is not functional other than movement to shoulder but no extension of the arm. His left wrist barely allows use of a JOY STICK control for movement. We're now in the planning phase for discharge to home. We need two caregivers as Betty and I cannot oversee Thomas 24/7. It is difficult as he remains with a fungal disorder Candida Arise without known "cure" or treatment methods. Some won't want to work with him. The care of Thomas is profound. A focus on basic care, toileting, turning each 2-hours or more for avoiding pressure sores (ulcer on skin), medication mgt., feeding as he cannot feed himself. The funding appears to have stalled to only those that seem to know the family. I am faced with extraordinary out of pocket expenses. There is no entity to "sue" for money and a pure freak accident.

JOHN BERG

June 18, 2023

June 18 2023 - (FATHERS DAY) Good day today. Thomas was flown back to Seattle late Friday 6/16 fro San Diego by air ambulance/Lear jet. Not cheap flight. He is in great suite at Harbor View Medical Center. View of Puget Sound and Mariners Stadium. The treatment team is impressive, the facility is a level 1 trauma center and well staffed. The Spine Cord Treatment in-patient program is two floors above him now. They plan to figure out what to do for protocol on Candida Auris fungus infection (asymptomatic) then get him into an action plan. ([email protected]) As of now, it is about 95 days post injury and has never been out of his bed other than transfers and brief cardiac chair to move from one place to another. Thomas can now close his left hand very very slowly and feel his thigh if you squeeze it for 5-6 seconds. Some sense of feeling is slowly returning to some areas. His biceps continue to allow lifting both arms to shoulder but not outward. No leg movements. The tricep response is minimal. Another improvement is swallow response. Something none of us really think much about. He continues to have PEG feed, IV's in arm and some small % of oxygen supplement into his trac tube. the other significant improvement is NO VENT to force pressure into the lungs. That is a big positive improvement. He needs blood pressure meds to increase pressure as opposed to most "normal" people worrying about high blood pressure. Thomas can eat oatmeal, apple sauce, sweet or mash potatoes but has not ever had regular fluids in his mouth. Swallow tests are required to avoid liquid simply entering the lungs. He has IV feed water. Yum? No. Maybe next week additional swallow testing will allow some use of straw to take in some normal fluids. Today, they (Respiratory Therapy) reduced the diameter of his trac tube. This is to allow or easier exhalation (more resistance) around the tracheostomy tube and through the upper airway and use a speaking value. Next week should be interesting. Date estimate to actually start active "REHAB". and, what to do about the fungus ? I will never forget the generous $ contributions to Thomas's campaign! We are so thankful of your donations! I plan to upload a video or two soon at Harborview Medical Center. Yours, John F. Berg

June 10, 2023

It is June 10th, Saturday. Thomas remains at Select Specialty Hospital in San Diego. Tomorrow marks day 90..... We "had" approvals for an in-patient spine rehab program at both University of Washington and HARBORVIEW MEDICAL CENTER. They both terminated the admissions due to two unresolved medical issues. #1: Candida fungus (though asymptomatic) as it has no known curative treatments to stop the spread to autoimmune patients. #2: Thomas needs ventilator support at NIGHT to sleep comfortable. Harborview has only space for 2-patients with vents and they are Full-Capacity. U of WA has no medical equipment for SCI patients if they remain vet dependent at all. This is the story I am told. One never knows the "whole truth and nothing but the truth". I am pressuring admissions to get a real solid date to fly Thomas back by air-ambulance. Yes, he cannot fly on commercial airlines as he has a PEG feed tube in his stomach that needs monitoring, a tracheotomy that allows both supplemental oxygen (At 30,000 feet in airlines , oxygen is less %), and suction from lungs plus a plug (Passy-Muir valve) to Speak. If you loose the ability to cough, fluids build up in one's lungs and can cause pneumonia. We speak with Thomas on an I-Pad clipped to his bed and have oral command to dial by voice only. Again, neither hand or any fingers function so no capacity to dial or use a phone or iPad.Voice activation required. I had a consult with a physiatrist at HMC and a plan for 6/13 to predict future plans. We must have an air-ambulance to fly him to Seattle from one hospital to HMC (Harborview Medical Center). I will follow-up with hopefully, a action plans back to Seattle. I certainly appreciate the generous financial support to Thomas medical funds for items not captured for medicaid coverage. John Berg

May 28, 2023

It is now Memorial Day weekend, May 28. Thomas remains in Select Specialty Hospital, San Diego since 3/12. He has not developed the ability to swallow actual "food" only recently some apple sauce, sweet potato but also, NO liquids in his mouth. That is a tough one to realize the major change of normal eating, chewing, enjoying tastes, gathering nutrition as opposed to a bowl box of unknown "nutrition" dripping into one's body by a tiny tube. He is now a skeleton, from a skinny dude, 6 feet 1" at 155 to about 120-125 pounds. Thomas is remaining using a ventilator to produce sufficient oxygen and to maintain blood pressure. It is very low even with medications to increase blood pressure. He was a "smoker" so has nicotine patches to avoid another trauma of withdrawals. The BIG news is University of Washington has a private room by about June 5th; he is to be in relative isolation due to the fungal disorder/Candida Auris. At least we can visit him locally, get second opinions from actual spine specialists (Physiatry;Physical Medicine) and some more active PT/OT movement. Can you imagine laying on your back with a C-Collar for 74 days straight? Unable to eat, getting turned every 2-hours to avoid pressure sores (a whole new topic), bad sleep, nobody around, and unable to move fingers, wrists to even use a iPad, phone or any device? I try to connect twice a day by FACETIME calls but he needs to have a Trac Plug in to speak. The trac remains in place and he has lung suctions several times/day as fluids, flew etc. build up fast when one cannot cough or spit. The next hurtle is getting an air ambulance service to pick him up and delivery to U of WA SCI program! Anyone that has paid cash (No insurance) for emergency aircraft knows its like buying a car for 2.5 hour flight. Thomas remains alive, struggling daily, in a tortuous status in anyone's view. All I can do is live each day and solve the daily problems that are arriving. I wish the news was better. Healing serious spinal cord injuries is not a continuous, linear progression, but 3 steps forward and 2.8 back. Some of the supporters are so amazing and appreciate you all so much! I'll post after his return. John Berg

May 11, 2023

The UW Spinal Cord Rehab notified us that they will not (currently) accept Thomas due to a medical condition he caught while in the hospital. The transport company also admitted to not being able to adequately"deep suction" Thomas's Tracheotomy, Feed through the PEG, and canceled the trip while billing us the full $13k+ bill. This is devastating news for us and most importantly Thomas. Thomas now is forced to stay/lay in the hospital bed, without SCI rehab for an unknown date.

We will have another update when there is better news.

May 7, 2023

Thomas is expected to return to Seattle by May 10th. He is accepted to the University of Washington Spinal Cord inpatient program. At this time, he can breathe without "pressure support" but remains having a Vent and small percentage of oxygen support (7%-9%)+. We will be seeing him daily as family & friends can visit him. No movement on either leg and can start to move his left thumb. We have uploaded a new picture. Your donations are so appreciated.

John Berg

May 5, 2023

This is a great day. Thomas has been able to recently BREATHE without "pressure support". Let me describe in non-medical terms. He has a tracheotomy at the base of his neck, it is hole with a plastic tube about 3/4 ' round down into his neck about 3 inches. The trach tube has options to attach, similar to a vacuum like tube that increases air pressure to the lungs, so "pressure support" to inflate and assist in deflating to breathe. The pressure support has been OFF for 4-days! That is a big deal. Those with high "C-Fractures" on spinal cord injuries often have lost some level of the bodies natural ability to produce normal breath function. OK, more. We live in a world of about 21% oxygen floating around on earth unless your'e in high elevation. He is getting a supplement of 30% so 9+% more oxygen that you and I. Not bad. Well, the airplane flying at 30,000 feet interrupts that function. They do not allow Thomas to fly unless 3%-9% maximum. He can have a nose inserted supplemental oxygen but not a full vent system. That is a problem that I hope tapers off the next few days. The SECOND big deal is he has been accepted into the University of Washington Inpatient Spine program estimated by 05/10 or so. They call it an "SCI" program for short. If he cannot taper off in a couple days, the cost of return flight includes TWO nurses and vent equipment to allow a safe return flight even though a 4 - 4.5 hour window in total time from Bed to Bed (San Diego hospital to Seattle SCI program). The specialized air flight alone is somewhere between a minimum of $15,000 and $30,000+. Ouch! THRID, he can now have "oral gratification" (That is what the Speech Language Pathologist calls it) eating pudding, apple sauce, or yogurt only, no solid foods. The swallow test yesterday day 5/4 demonstrated he could inhale some of the food into the lungs as his trachea (airway) may capture some food not the esophagus (the hollow muscular tube that passes food/liquid from throat to stomach). His muscles have experienced atrophy from intubation 21+ days and now 55-days without eating from mouth. Imagine not swallowing for 55 days? His "nourishment" is a plastic container hung on a metal rack flowing into his stomach in a device called P.E.G. feed tube (Percutaneous endoscopic gastrostomy) Direct feed into the patient from a pureed light brown liquid. I hope your not eating dinner reading this......So the end of this rant is Thomas is expected to return to Seattle before mid May, enter a SCI program and get active care specialized by experts in the field. I want to say that I am overwhelmed with so many people I know, colleagues of incredible generosity and strangers who have donated to help us. It does, "take a village" to manage such traumas and I shall never forget or under estimate the kindness in others!

John Berg

May 1, 2023

Thomas is still presently at Specialty Select Hospital, San Diego. The goal this week is to gradually build up his ability to BREATHE independently without "pressure support"; a machine plugs into the tracheotomy tube and provides lung support (pressure) and oxygen. They can increase/decrease either variable or shut it off. Thomas was discharged from SICU (surgical intensive care unit) after five weeks at UCSD-Hillcrest Hospital. ICU's are not place anyone want to be.....noise, lights, waking up every two hours to turn and inspect his skin, patients suffering all over from terrible injuries in rooms next to his. I have a renewed appreciation of NURSES ! - Respiratory Therapists and Speech Therapists. We take"breathing" for granted. When a high cervical and spine injury occurs, the individual often looses some, and or sometimes most capacity to breathe without some type of technology assisting. The bodies brain to nervous system shuts off like a failed electrical system at home. Minimal flexion is observed in his left wrist (1/4"), no fingers at all or any actions or motions on his legs or feet. He cannot speak as the Tracheotomy system in the lower front part of his neck, blocking the ability to speak for now. They plug into a "Passy-Muir" device to allow speaking and he can do that for a short period of time. Otherwise, we can only communicate by reading lips (good luck on that!) or use a reader board spelling out word by word. Frustration for both parties is a nice term when trying to converse with the tracheotomy. I am in contact with spinal cord programs coordinating a possible in-patient plan at University of Washington, the regional Seattle Spinal Cord in patient treatment. If he continues to gain the ability to breathe without outside assistance, he can be flown by "medevac" to Seattle. That alone is $25k+ with Flying Angels, and the flight & immediate care from Mexico was nearly $40,000 + alone I paid for in cash. This is a very expensive, life long impairment no matter how he regains some form of extremity use. I so appreciate the donations so far and now fully understand how the USA health plans are terrible for an average person, unless the individual pays a very high premium or has an employer paying the premiums. Most 20-30 year olds think disabilities thing will not happen and often that is true. Thank you for your concerns at any level and understanding how severe spinal cord injuries change all relationships in family and friends.

John Berg (father of Thomas).

April 27, 2023

Thomas is on a "vent weaning" program at Select Specialty Hospital in San Diego, CA. Transferred from UCSD Hospital 4/18/2023. He was intubated from 3-12-4/18 and now has the ventilator into his tracheotomy . The goal is to remove the dependency on Oxygen to breathe and plan for admission in a spinal cord in-patient program. He cannot breathe without support due to the damages to his C-3, C-4 and C-5. They try to disconnect oxygen and pressure support for lung function several hours a day. This is to increase lung function and stamina, like getting muscles in shape. I plan to offer periodic updates to those concerned and interested in how a person you know or have association with, really deals with such a profound injury. If you want, I can accept phone calls to address issues more privately or confidentially.

John Berg (father of Thomas). (206) 852-6559 - cell.

April 26, 2023

April 27, 2023

A few years ago, life is great!

April 15, 2023

My Campaign Pictures

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December 3, 2024

Thomas has maintained stability but no real physical improvement. It’s 1.6 years.
We have a live in Caregiver and a 10-6:00 Monday through Friday second Caregiver. Betty is the key provider and has done an exceptional job in this family crisis changing our trajectory forever. Thank you for donating at any level!
John Berg

John Berg

December 14, 2023

John, I am so sorry to hear about this. Shannon and I have your family in our thoughts and prayers this season. I am hopeful that Thomas can make some progress in 2024. I know he has a great family to support him.

Jim and Shannon Gooding

November 10, 2023

In the spirit of the Thanksgiving season, I am happy to share with you from the ongoing bounty that is also given to me and for which I am grateful. Bob Paré

Robert Pare

July 18, 2023

I am glad to read that Thomas is back in Seattle, but sad to hear of all the ongoing struggles. I think of you often. I did try to send a personal email awhile back, but it kept getting sent back to me. Cyberspace! Do take care of yourselves. I am so sorry you are having to live through all of this.

Hugs from "Boise Barb"

Barbara Nelson

July 15, 2023

A real milestone to have the trac removed. As you describe it, Thomas will now be able to enjoy food and liquids again in a \"normal\" fashion. My prayers are still with you and your family as you continue making your next plans.

Jan Lowe

July 8, 2023

Continued support for my brother

alison berg

June 22, 2023

Thomas, our prayers are with you !! Hope you heal soom.
Jim and Mara

James Hart

June 22, 2023

Keeping everyone in my thoughts and prayers.
Stay strong. Praying for healing, strength and comfort.

DONNA LIU

June 15, 2023

Wishing for some good luck to Thomas and the family.

Mark Switzer

June 6, 2023

Continuing to follow and offer ongoing support to you, John, to Thomas of course, and to the whole Berg family.

Bob Pare

May 30, 2023

Sending best wishes.

Jennifer Bennett

May 16, 2023

The team at Kincaid Wolstein wishes all the support in the world during these difficult times.

Dan Wolstein

May 12, 2023

Please know we continue to think about the entire Berg family and most especially Thomas. Through this incredibly difficult, challenging and life-altering time please continue to let us know what we can do to help.

Richard and Tammy O'Connor

May 12, 2023

Thinking of ya, Tom.

David Marowitz

May 12, 2023

So sorry to read of your additional troubles. Hopefully this is just a glitch and progress will soon move forward and Thomas will be in Seattle where I know all of you want to be. I honestly cannot believe that a transport company would confiscate their full payment for a trip that had to be delayed for medical reasons. It can be such a hard world. In the meantime, stay strong. Thomas is very fortunate to have you for his father. Even with all your knowledge and expertise, it is a difficult journey to navigate. Sending a ton of best wishes!

Boise Barb