Monty Cassellius

First post: Sep 27, 2015 Latest post: Jan 7, 2020
Monty’s Story

Monday November 13th, 1972: Birth; Monty was Born to the parents of David & Vicki Cassellius about 12:30pm at Swedish American Hospital, Rockford Illinois. Monty was 18” tall and weighed 7.2 Lbs.

Tuesday November 13th, 1973: Unusual Weight; Monty weighed 44 lbs. at age 1 and also when Monty went to kindergarten (September 1978) weighed100 lbs. both very unusual for Monty’s age but at that time no one knew of the Bardet Biedl Syndrome (BBS) which obesity is one of the symptoms

Fall of 1984: Diagnoses; Iowa Methodist Medical Center (IMMC) Des Moines IA; Monty went with his parents to the clinic to meet with Dr. David Langdon to discuss concerns of growth and development which was the first findings Monty having Bardet Biedl Syndrome (BBS).

Monday November 5th 1984: Additional Examination; University of Iowa (UI) Iowa City IA; Met with Dr. Frank Judisch for additional examination of what/how BBS will affect Monty’s health.

Thursday December 28th, 1989: Recipient;

Boy Scouts of America (BSA), Irving, TX

Eagle Scout Award, National Eagle Scout Association (NESA)

Thursday December 27th, 1990: Diagnosed; Davis Duehr Dean (DDD): Madison, WI; Dr. Neil Lucchese provided a letter outlining Monty’s vision status from Neil’s examination of Monty’s retina documenting Monty is legally blind to provide to the Social Security Administration (SSA) applying for the Supplemental Security Income (SSI) program.

Thursday June 6th, 1991: Graduation;

Wisconsin School for the Visually Handicapped (WSVH): Janesville, WI

High School Diploma

Sunday March 26th, 1995-Friday April 14th 1995: Hospitalization; Advocate Bromen Medical Center (ABMC): Bloomington, IL; Monty was found in the Illinois State University (ISU) community bathroom Monday 8am. Monty was taken to his dorm room by a friend (Daren Bolton) and Dorm RA. Since Monty was covered by urine and puke they felt Monty was drunk. At about 3pm Monday afternoon Daren had sent someone for checking on Monty in his room. Monty was found lying sideways in his closet with the phone receiver against his head. Monty was still in a non-responsive state 911 was called. Monty was Taken to the hospital by ambulance. Monty came alert about 6 am on Tuesday on an ice bed in the Intensive Care Unit (ICU). Monty felt the oxygen plug in his nose and he tried to move his arm to touch it and since Monty had been violent being transported by the EMT’s they restrained him. Monty had been in a coma since early Sunday morning, so he figured he was still in his dorm room. Monty started mumbling “I can’t even touch my nose”.

Vicki Debler, Monty’s Mother, was sitting in the ICU room and she asked Monty if he was awake. Monty said “yes” but what are you doing in here because Monty still assumes he was in his dorm room. Vicki bolted out to get a nurse. When she returned with a nurse, the nurse explained what happened to him and she cleaned him up. The nurse indicated as long as he

did not attempt to get out of bed Monty would not be restrained? After cultures were done Monty was found to have massive Staph throughout his body. Monty was treated with massive “in-house" antibiotics for two weeks while in a private ABMC room. then discharged to his mother Vicki Debler’s home where he was also treated “by port” with antibiotics. At that time Monty’s family was told that the Staph had added damage to his heart valve due to his having a heart murmur and this was a weak part of his body when the disease traveled to his brain causing the coma. Now Monty’s family is aware that the heart issue was congenital.

Thursday May 4th 2000: Procedure; Gailey Eye Clinic (GEC): Bloomington, IL; Cataract removed & replaced lens in Monty’s right eye

Saturday May 13th, 2000: Graduation;

Illinois State University (ISU), Normal, IL

Bachelors of Science: Economics

April 1st, 2001: Moved; Moved From Normal, IL to Richmond VA

Monday April 9th 2001: Employment;

Virginia Industries for the Blind (VIB), Richmond, VA

Collection Agent

Saturday September 21st, 2002: Episode; Jason Wermers (friend) and Monty were attending a college football game at the Naval Academy in Annapolis, MD when suddenly Monty experienced Severe shortness of breath which seriously concerned his health. The following week Monty met with his general doctor and was referred to a cardiologist.

Monty met with a cardiologist sometime within the next month. Monty was started on heart medications after being examined with several heart tests.

Monday April 24th, 2006: Employment;

Capital One Financial Services (COFS), Richmond, VA

Customer Service Representative

Saturday May10th, 2008: Graduation;

University of Louisville (UL): Louisville, KY

Masters of Education Degree: Special Education-Assistive Technology Track

April-August 2008: Episodes; Monty had consistent Upper Right Quadrant stomach pain which was examined by gastroenterologist and several tests were done and the tests were negative. The doctors felt Monty’s gallbladder was the reason behind the stomach pain, lack of energy, and heavy sweating.

Friday August 22, 2008: Episode; Chippenham Medical Center (CMC): Richmond, VA; 5:00PM Monty went downstairs in his apartment to put something into the oven for dinner. When he returned to his upstairs bedroom and sat down his body locked up and was very difficult to breathe. Monty made into the bathroom feeling he would get really sick. After waiting for at least forty-five (45) minutes he called 911. When the ambulance came his breathing worsened and Monty was put into the ambulance and taken to CMC less than 3 miles away. 7pm Monty arrived at the CMC 11:30pm Monty heard code blue on a speaker, then someone ran in and grabbed him and put him backward, he blacked out at this time which turned out to be a cardiac arrest lasting approximately 30 minutes.

Saturday August 23rd, 2008: Episode; CMC: 1:30am Monty had a second cardiac arrest while in the CMC lasting Approximately 30 minutes 2:00am Likune Sissay a friend of Monty’s (emergency contact) called Vicki Debler, Monty’s mother And Likune told her Monty is in critical condition and she needed to call Dr. David Gilligan from the CMC. Vicki called Dr. Gilligan at the CMC. She needed to give verbal permission to perform a heart catheterization test to see the amount of damage to Monty’s heart. 3:00AM Dr. Gilligan returned a call to Vicki and said there were no blockages, but would try to keep Monty alive until Vicki arrived from Hammond, Wisconsin. 5:00AM Likune sent a text message to ten (10) friends to alert them of Monty is in the CMC ICU 10:30am About thirty (30) friends from the Greater Richmond Church of Christ (GRCOC) arrived and filled the CMC ICU waiting room. The ICU Team allowed 3 visitors to visit Monty at a time. 11:30AM Vicki Debler arrived from Hammond, WI 3:00 pm Monty awoke to find Vicki at his side. He was on a ventilator and restrained.

Saturday August 23rd 2008-Monday August 25th 2008: Update; CMC: Monty remembers very little about what went on the first couple of days in the CMC ICU Due to being on the ventilator and on a very high dosage of medications.

Monday, August 25, 2008: Update; CMC: 4:30am Monty’s father, David Cassellius from Portage, WI and Aunt Carmen Hill from Hartland WI arrived at the CMC ICU by car. 1:00pm Monty was taken off the ventilator by Helen Hughes, RN and was able to speak again. Up until this point he communicated by writing on a clipboard. Many tests were performed to find what caused the cardiac arrests. The Doctors contributed the arrests to a leaky valve, and enlarged heart, one of the features of a rare recessive genetic syndrome called Bardet Biedl Syndrome (BBS). A little information about BBS, the syndrome is a complex disorder involves many body systems. BBS is relatively rare, affecting about 1 in 100,000live births. BBS is caused by a recessive inheritance pattern there is a ¼ chance with every pregnancy of passing on both defective genes to a child. There is no possibility for having a child with BBS only one parent passing on the defective gene. BBS is characterized mainly by obesity, blindness (often diagnosed as Retinitis Pigmentosa (RP), polydactyly, hypogonadism, and in some cases, renal failure. 5:00pm DR Zocco visited Monty and wanted to perform a valve replacement very soon.

Tuesday August 26th, 2008: Update; CMC: Antibiotics were administered so Monty's system would be clear of any viral or bacterial infections. Since this point Monty’s body was still infected from the cardiac arrests. Which at this time did not allow for heart valve replacement surgery and the scheduled surgery for Wednesday was cancelled.

Wednesday August 27th, 2008: Update; Carmon Hill flew back home in Heartland, WI. She had rode with Monty's father David Cassellius to Richmond, VA.

Thursday August 28, 2008: Test & Room Transfer; CMC ICU: 2:00pm Monty had an echocardiogram taken 3:00pm Monty was moved to the step down unit and was assisted by Patty Eitchar, RN in CMC.

Friday August 29th, 2008: Doctor Visit; 7:00am William Coble visited Monty’s room to tell him of the Transposition of the greater vessels (TGV) condition needing a heart transplant and wanting immediately transfer Monty to the University of Virginia (UVA) heart Transplant Center in Charlottesville VA (about an hour west of Richmond, VA). All were aghast at this news and started looking into moving Monty to a transplant center in Wisconsin.

Tuesday September 2nd, 2008: Phone Calls; 10:00AM David Cassellius started calling the list of possible medical facilities in the Wisconsin area. When he returned to Monty’s hospital, Daivd informed Monty of an open room waiting for him in Minnesota. Shortly after receiving this news, Vicki Debler completed a phone call to Monty’s insurance Aetna. 10:30AM Aetna indicated they would provide medical Airplane Ambulance to anywhere Monty wanted to be transferred for further medical care. Mayo Clinic Minnesota Rochester St Mary Campus (MCMRSMC) indicated they had an open bed and Monty’s family indicated Monty would want to be transferred to the MCMRSMC Cardiac Wing.

Wednesday September 3, 2008: Transfer Process; CMC: 1pm David Cassellius left to pack up to return to Wisconsin 3pm David drove home and got home about 10am the next day in Portage, WI. Monty prepared for his airplane ride to Minnesota by getting a shave and bed bath, and washing his hair he was assisted by Patty Eitchar.

Thursday September 4th, 2008: Facility Transfer; CMC: 7:00AM Monty’s friends came to wish him off to MCMRSMC from Richmond VA. 2:15pm left for the airport via ambulance 3:30pm After Monty was taken out of the ambulance and by stretcher put onto the airplane. Monty's foot was tapped by a pilot and Monty was asked for a photo ID (Monty only had a hospital gown and underwear). He lifted his head and asked you need what?. The pilot asked again for a photo ID and Monty indicated to the pilot ask Vicki, Monty thinks she has his wallet. Then once the pilots, medical personnel and Vicki boarded the plane, the pilots started the liftoff process. Then Monty and Vicki were flown by Air Ambulance Lear Jet to MCMRSMC in Rochester, MN.

Thursday September 4th, 2008: Facility Transfer; MCMRSMC: 6pm arrived at MCSMC Brandy Pritchard, RN assisted Monty getting settled in his MCSMC room. Monty indicated he needs to go to the bathroom. He was given a urinal and everyone walked out for him to go to the bathroom. Suddenly, his feet were getting wet while using the urinal and after finishing he held up the urinal and discovered the two (2) pin holes on the bottom. He flipped back on the bed to press the call light and asked to have someone get in here right away to clean the mess up. By the time the nurse (Brandy) got to Monty’s Room, all of the contents of the urinal were on the floor. After Brandy mopped up the floor, changed the sheets, and changed his gown. Testing began immediately; the first test proved conclusive Monty did not have TGV. Testing continued the rest of the next day.

Friday September 5th, 2008: Medical Tests; MCMRSMC: Testing was continued throughout the day. Late afternoon a team of nine (9) doctors came to discuss a basic summary of the day of testing. The medical team indicated Monty did not need a cardiac transplant but Monty’s heart was still in poor shape. The doctors would review the test results and discuss further options on Monday for resolving his heart issues. At evening time, Vicki left to catch up on things at home (Baldwin, WI) after being in Richmond, VA since Friday August 22nd, 2008.

Saturday September 6th, 2008: Episode; MCMRSMC: 8am David and Joan Cassellius (step mother) arrived at MCMRSMC ; 10:45am Aunt Carmen and Uncle Keith Hill arrived from Hartland WI 11:00am while in his room with parents and relatives having a discussion with the Dr. Parks heart team and Brandy Pritchard RN, Monty had another cardiac arrest. This time chest compressions took sixty (60) minutes to bring him back. During the arrest Monty came alert a minute felt everyone on top of him but had no idea what was happening, then Monty heard what he thought was a gunshot which was shocking his heart and Monty blacked out again. David contacted Vicki about Monty’s cardiac arrest and she returned to MCMRSMC immediately. Once again, Monty was on the ventilator. Blood gasses were checked continuously as the blood oxygenation needed to be at a certain point before he could be taken off the vent.

Tuesday September9, 2008: Update; MCMRSMC;

In the afternoon, Monty came back to his feet, He was in so much shock from being alive going through the Cardiac Arrest on Saturday. Monty was not able to speak with the doctors when they came to discuss replacing his aortic heart valve. Monty simply looked away from the doctor when he asked him any questions in regards to surgery. Monty was advised by the doctors to replace the aortic heart valve to stabilize his heart instead of a Cardiac transplant. Monty was able to talk when relatives came the next day.

Wednesday September 10, 2008: Family Visitors; MCMRSMC: in the morning, Aunt Dawn Willert, Uncle Al Willert, and grandmother Vergal Willert visited Monty. In the evening, Sister Carey Sang and her husband Chris Sang, Cousins Greg Sumner and Bev Hewitt visited Monty

Thursday September 11, 2008: Procedure; MCMRSMC: 10:00am Heart Valve replacement surgery went well but took some time to intubate Monty due to his small airway and inflammation due to having been intubated two times previously during this month in the hospital. Monty was on the vent, ice blanket, and ice bed for four (4) days in the ICU, due to a fever, which was determined to be caused by either an infection of the intravenous (IV) line or an Antibiotic called Zosyn.

Monty’s temperature spiked to 105 F degrees

Monday September 15, 2008: Update; MCMRSMC:

Shortly after getting off the ventilator, Monty met with a doctor regarding implanting an ICD. The doctor indicated the ICD would not be foolproof but would be a great insurance for Monty’s heart issues. Monty responded “sounds great lets do the surgery right now”, Monty repeated this to the doctor several times. Finally the doctor grabbed Monty by the wrist and indicated need to talk to you regarding something. Monty responded “ok what do you want to talk about”. Monty continued to talk nonstop for 2 days after being extabated off the ventilator. This unusual by Monty was due to the medications while in the ICU.

Monty finally sit still for him to finally crashed and slept for about 15 hours.

Friday September 19th, 2008: Procedure; MCMRSMC: 11:00am Medtronic ICD / Pacemaker implantation surgery which last until 5:00pm due to difficulty placing the leds in the correct location within Monty’s heart and the correct amount of electricity to charge Monty’s heart when the ICD is activated. The ICD/Pacemaker is to assist with any abnormal heart rhythms which could possibly occur in the future. A typical settings is ten (10) jewels but Monty’s was set at thirty six (36) jewels due to his Cardiomyopathy 4:30pm Vicki left for home to make arrangements for Monty to be transported to her home on

Sunday September 21st, 2008 and David & Joan arrived at SMMC sometime in the afternoon.

Saturday September 20, 2008: Visitors & Update; MCMRSMC: In the Morning, Monty’s family was informed a kidney had been located for Monty’s nephew, Samuel David (age 7), son of Kelsey Cassellius located in Portland, Maine. The kidney transplant went well and his progress at this time is great. 12:00pm Melissa Ostrander and Crystal Barnes (Chicago, IL) friends came to visit Monty for the day.

Sunday, September 21, 2008: Discharged; MCMRSMC: 10:30AM Monty was discharged from SMMC. He moved to Hammond, WI to begin recovery while living at Vicki’s home.

Wednesday October 1st, 2008: Doctor Visit; Western Wisconsin Health (WWH): Baldwin, WI; follow up at WWH with Reid Berger.

Monday October 6, 2008: Rehabilitation; WWH: Monty began in a cardiac rehab program to improve his strength. Monty’s doctors have recommended permanently not returning to work due to his ejection Fraction is between 10 & 20%. Normal range is near 60%.

October-December 2008: Updates; WWH: Monty had additional follow up’s with PA Reid Berger WWH and with the St. Paul heart Clinic (SPHC). 12/16/08 Monty began the process applying for Social Security Disability Insurance (SSDI). 12/22/08 Monty graduated from the cardiac rehab Program.

August 2009: Moving; Once Monty Received SSDI he moved from Hammond, WI to the Eau Claire WI area to be closer to friends, activities, and for doctoring.

Friday April 2nd 2010-Tuesday April 6th 2010: Hospitalization; Mayo-Eau Claire Luther Campus (MCMHSEC): Eau Claire WI; Went to Emergency room (ER) a couple times during the week due to pain in Monty’s right upper quadrant of his stomach/abdominal area, ER staff felt pain was caused by Medtronic ICD which was in planted at the Mayo Clinic. Referred to: MCMRSMC several tests performed for possible movement of Medtronic ICD leads. Nothing was found regarding possible movement of leads. After a few days pain improved not sure what was cause of the pain and was discharged from hospital.

Friday September 9th, 2011 to Sunday September 11, 2011: diagnosed & Hospitalization; MCMHSECLC: Diabetes Mellitus Type II MCMHSEC General Doctor indicated from lab work earlier in the day Monty’s A1C was 10 and glucose level was over 400, was placed into the hospital for the weekend to regulate glucose levels by starting insulin injections and oral medications.

Friday May 31st 2013 to Thursday June 6th 2013 Hospitalization & Procedure; MCMHSECLC: Doctors were concerned Monty may have Gaul bladder cancer based upon tests and not having typical symptoms from an inflamed Gaul bladder. Local surgeon performed Cholecystectomy once receiving tests results confirming Monty did not have cancer in his Gaul bladder was discharged to home and Vicki Deber stayed for a few days.

Tuesday August 27th 2013-Friday September 13th 2013: Hospitalization; MCMHSECLC: Edema developed in Monty’s stomach, was given IV diuretics to remove 50 lbs. of fluid which was caused by prior surgeries in June and combined with Monty’s poor heart condition, referred to Syverson Lutheran Home (9/3/13)to improve health before returning home.

Wednesday October 16th, 2013 to Thursday October 17th, 2013: Procedure; MCMHSECLC: Medtronic ICD was replaced with St. Jude Medical Cardiac Defibrillator

Thursday December 4th 2014-Monday December 8th 2014: Procedure; MCMRSMC: Partial ablation, the surgeon discovered during the procedure the left side of Monty’s heart muscle is shot and will never respond to any form of therapy. Monty was advised to pursue Cardiac transplant. BMI was 41.6.

Thursday December 11th, 2014-Thursday December 18th, 2014: Hospitalization; MCMHSECLC: Early afternoon while talking with Monty’s sister Carey on the phone, developed symptoms of a heart attack, after 10-15 minutes on the phone, Monty simply hung on Carey and called 911 was taken to ER by ambulance, Monty did not have a heart attack, Once stabilized in the ER Monty’s sister was called to inform her why Monty hung up on her earlier in the day, 30 lbs. of fluid built up in his chest and the excess fluid caused the chest pain & shortness of breath, and Paracenteses by using diuretics on an IV drip was used to remove the fluid.

Monday January 19th, 2015-Tuesday January 20th, 2015: Evaluation; MCMRSMC; Initial Cardiac Transplant Evaluation

Tests Performed: Lab work, chest x ray, EKG, echocardiogram, exercise test, and ICD Check. Monty met with several doctors from the Transplant Center to learn multiple items to consider pursuing transplant. The first issue to resolve is to get below 35 on the Body Mass Index (BMI) at this time his BMI was 37.2.

Thursday July 16, 2015-Friday July 17th 2015: Evaluation; MCMRSMC: Six Month transplant Evaluation Follow-up BMI 34.8: Tests Performed: Lab work, CT, chest x ray, EKG, echocardiogram, exercise test, and ICD Check

Test Results: Echocardiogram, Ejection Fraction (EF) Monty’s EF 10% Normal Range: 60-65% Transplant Consideration Point: 15%. Exercise Test (VO2) Monty’s VO2: 8.2 Normal VO2 Range: 25 Transplant Consideration Point: 14 after reviewing tests results, Dr. Boilson Recommended performing the Comprehensive Transplant Evaluation.

Monday October 19th, 2015-Friday October 23rd, 2015: Cardiac Transplant Evaluation (CTE);

Mayo Clinic Minnesota Rochester St Mary Campus (MCMRSMC): Rochester, MN;

-Day 1 Monday October 19th, 2015: Today, Monty had three different labs drawn; one lab was dropped, met with one of the transplant doctors, social worker, Financial Services, Transplant Coordinator, and Psychiatry.

-Day 2 Tuesday October 20th, 2015: Tests: Six Minute Walk Test: Monty Walked 960 feet in Six Minutes, Pulmonary Function Laboratory, Bone Mineral Density, Exercise (stress test) was cancelled Consults: Transplant Medication Review with Pharmacy Consultant, Infectious Disease Consultant; simply learned more about what Monty will need to do after receiving a new heart tsuch as staying away from large crowds of people, people who are sick etc., due to my immune system will be suppressed and Monty will be very susceptible to get sick or even worse .

-Day 3 Wednesday October 21st, 2015: Tests: Renal function test, CT scan consults: Cardiology Disease Education, Division Of oral and maxillofacial Surgery.

-Day 4 Thursday October 22nd, 2015: Tests: Cardiac Lab Procedure, Pulmonology Function Test Consults: Surgical consults about the Procedure earlier in the day.

-Day 5 Friday October 23rd, 2015: Consults: Lungs Physician Consult, Endocrinology, Dietitian, Heart Transplant Patient Education Vicki and Monty will be headed for home once the final appointment will be finished at 12:45 today. Vicki will drop Monty off at the Serving Hands Evergreen Assistive Living Program in Chippewa Falls WI and then she will go home to her apt in Baldwin WI to relax! Monty will receive a phone call from one of the transplant coordinators sometime next week regarding the decision for being placed onto the Mayo Clinic Heart Transplant List

November 2015-March 2016: Updates & Tests; MCMRSMC; 11/16/15 Repeated the exercise test and VO2 was 8.2 the same as July 2015 12/8/15 repeated the echocardiogram and the result of EF 10% which was the same from July 2015 1/26/16 saw the Neurologist he didn’t see anything in regards to Monty’s breathing he setup some test to do which was changed to a different test by the transplant doctor seen later in the day 3/15/16 Repeated PFT and met with a Pulmonologist, he indicated Monty did not do much better on the PFt from October 2015 and recommended doing a EMG test 3/18/16 Had the EMG test never received test results not sure if Monty really have a muscle issue in his lungs 3/28/16 Monty was denied placement on the Mayo Clinic Cardiac Transplant List due to Lung Issue the Transplant Team felt Monty would not do well with surgery and getting off a ventilator

March-July 2016: Cardiac Transplant: 2nd Opinion;

Aurora St Lukes Medical Center (ASLMC): Milwaukee, WI; Thursday March 31st, 2016

Monty Contacted ASLMC for a second opinion regarding Cardiac Transplant. Monty was told ASLMC needs to check with their financial Department to see if Monty’s insurance to allow a second opinion. Then ASLMC would request records from Mayo Clinic to understand Monty’s case and determine if ASLMC would meet with Monty. Tuesday May 3rd, 2016: Doctor Visit; Mother Vicki Debler , Uncle Kieth Hill, and Aunt Carmon Hill Attended Monty’s doctor visit with Dr. Vinay thohan he reviewed the records from the Mayo Clinic. The three concerns were in order: Family support, Antibodies issue in Monty’s blood, and Bridge to Transplant such as the LVAD. Monday May 16, 2016 to Wednesday May 18th, 2016 Cardiac Transplant Evaluation (CTE) Uncle Keith Hill and Mother Vicki Debler attended the Six Doctor visits Monday morning, Keith left for work when Monty checked into the hospital to begin the testing Monday afternoon and was discharged on Wednesday. Monty has a follow-up on 5/31/16 with Dr. Vinay thohan to discuss the results of the CTE. Currently the plan is to replace Monty’s aortic Valve by Thoracic Aortic Valve Replacement (TAVR). Tuesday May 31st, 2016 & Thursday June 30th, 2016: Doctor Visit; Had two visits with Dr. Vinay thohan from the transplant dept., and after those visits, Monty decided not to pursue Cardiac Transplant and decided to pursue TAVR Wednesday July 20th, 2016 & Wednesday July 27th, 2016 TAVR Process; ASLMC Monty had a Transesophageal Echocardiogram (TEE) on the 20th and met with the TAVR team on the 27th. They felt TAVR would be dangerous for Monty. TAVR Team wanted to consult the ASLMC Transplant Dept. to consider other options

Sunday August 21st, 2016-Thursday August 25th, 2016: Bardet-Biedl syndrome Evaluation

Marshfield Clinic (MC): Marshfield, WI;

Sunday August 21st, 2016: Arrival; 5pm Arrived at hotel where Vicki Debler & Monty stayed during the week: Baymont Inn & Suites 2107 North Central Avenue Room 118 Marshfield, WI 54449 -5240:

-Day 1 Monday August 22nd, 2016: 7:30am Lab Mfld Central Lab

Gave Six Tubes of Blood and Urine Sample, 8:00ARE Fitmate Brianna Czaikowski Desk 1A

Test indicated the level of 2240 calories to keep Monty’s weight stable, 8:30AM Audiology Deborah Grall Desk 4B2

Procedure: Tympanometry, bilateral for Sensorineural hearing loss of both ears & Comprehensive audiometry (threshold) for Sensorineural hearing loss of both Ears), 9:00AM Nutrition Tammi Timmler RD CDE Desk 4K5

Discussed dietary ideas was given materials, 10:30AM Ophthalmology Yan Guo MDDesk 4B2

General Eye Exam, Didn’t realize Monty still have some light perception in his right eye, 11:30AM OT Gloria Josephson 4E

ADL Evaluation, 3:30PM dermatology Thomas McIntee MD Desk 3P

Felt no serious/significant issues with Monty’s moles, suggested a shampoo, skin lotion and certain spung to manage some issues with his skin, 5:30PM-8:00PM Dinner lawton A/B

Opportunity to meet with Marshfield Clinic Staff and five other families from the Wisconsin Illinois area who were also involved with theBBS Evaluation. After dinner Dr Miller led a Q&A session between staff and family member lasting an hour.

-Day 2 Tuesday August 23rd, 2016: 7:30AM Abdominal Ultrasound 2K1, 9:00AM Physical medicine Jill Meilahn DO 1K

Suggested two exercises for the pain in Monty’s right side, 10:00AM Endocrine Shankar Bettadahalli MD Desk 4K5

Concerns with Monty’s Cholesterol levels, 1:00PM Behavioral health Michael Miller PHD Desk 1A

Provided suggestions for Behavioral health management such as giving ideas for distraction for dealing with pain management, 2:30PM Pharm D lawton c

Matched up Marshfield Clinic Medication list with the MAR medication list Monty provided; discussed medication questions related to BBS such as if Monty’s medications may cause constipation, does BBS cause Monty not to respond to pain medications, etc.

-Day 3 Wednesday August 24th, 2016: 8:30AM EKG Cardio Lab; Desk 2D, 9:00AM Cardiology Roxann Rokey MD Desk 2D, 11:00AM Neuro/Sleep Jaime Boero MD Desk GA, 12:00PM Luncheon lawton A/B, 1:00PM-2:00PM Exit Interview with Dr Robert Haws M MD Pediatrics; Desk 1A.

-Day 4 Thursday August 25th, 2016: 8:00AM Pulmonary Unit Desk 2F, 9:00are Pulmonary Craig Wolfe Desk 2F

Review the PFT from this morning and compared PFT from MCMRSMC andASLMC, did Lab work and Six Minute Walk to completely eliminate any possibility of any lung issues, probably simply Monty’s technique during the PFT; during the test the technician had difficulty repeating similar results of Monty’s lung function, 10:00AM Nephrology Jiwan Thapa MD Desk 4A1

Reviewed Lab Work from Monday, suggested to increased taking Vitamin D, Heart Failure probably largest reason for any reason for Monty’s Kidney issues at this times, doctor felt need to have kidney function test every 6-12 months, 2:00PM Returned home

Thursday September 1st, 2016: Doctor Visit; ASLMC: Monty had a test to prepare for the TAVR Procedure. Keith & Carmon Hill and Vicki Debler attended the following a jointing doctor visit to answer any questions regarding the procedure.

Thursday September 15th, 2016: Procedure; ASLMC: Due to not being informed of needing to be off Phentermine: Fastin for ten days before the procedure, The TAVR procedure was cancelled

Monday September 26th 2016-Saturday October 1st, 2016: Procedure;

ASLMC; Thoracic Aortic Valve Replacement (TAVR)

-Day 1 Monday September 26th, 2016: -Rode with Keith & Carmon Hill and Vicki Debler

Reported at 8:30 for preparing for TAVR procedure

ASLMC SDIS gave Family members a IPad to keep track of Monty’s progress of the procedure, - Procedure 11:30AM-2PM Right side of Monty’s groin 3” incision for the Procedure and 1.5” incision on the left side of Monty’s groin for Placement of use of the Heart & Lung Machine during the Procedure. -Family Members received electronic message indicated during procedure moving along very well, -Family Members received electronic message at 2:18PM indicated for them to return to (designated area) visiting station and Doctors will provide full report of Monty’s TAVR Procedure, -Taken off Ventilator 5:15pm in ICU, -Keith, Carmon, and Vicki went home about 8PM to Heartland WI Keith Hill’s residents, -Started eating ice chips at 9:00PM, -Started drinking water and stood up (VERY painful) for the first time at midnight.

-Day 2 Tuesday September 27th, 2016, -Still in the ICU, -Had liquid Breakfast about 7AM had coffee for the first and only time due to being cold, -During the morning met with variety of doctors from the TAVR Team regarding Procedure from yesterday, -Vicki Debler returned at about 8:30am, -Had solid food lunch about 12:15PM, -Had Solid Food Dinner about 5PM and had solid meals for the remainder of Monty’s stay, -Keith Hill Returned to visit 4:30-6Pm, -Cousin Raberta Finer Visited 4:30-5:15PM, -Received phone calls from friends and relatives 7-8:30PM.

-Day 3 Wednesday September 28th, 2016, -Still in ICU and continue to progress, -In the morning met with a few doctors to check with status of progress, -Vicki Debler returned 8:40AM, -Grade School Friend Linda Krueger visited 2:30PM-4PM, -Church Friend Ramon Rodriguez Visited 4:15-6PM, -Vicki Debler left for Keith Hill’s Resident’s in Hartland WI for the evening.

-DAY 4 Thursday September 29th, 2016: -Still in the ICU continued to make great progress, -In the morning had the final tubes removed in my arms/neck, Met with a few doctors for check up, and got washed for transport. -Was transferred out of the ICU to a General Patient Room at 11AM; walked over 300 feet and pushed a wheelchair for the transfer process with no problems and was able to walk twice as fast before the procedure (informed by Vicki Debler), -In the afternoon: Visitors: Kelly Wusler, (Church Friend), Carmon Hill, Corless & Randy Iwanski (Cousins Carmon’s Daughter), -Kelly left for home about 6PM, -About 6:45 pm Vicki Debler went to Hartland WI for the evening, -7:20PM Carmon, Corless & Randy went Home, -Went for a walk at 9PM.

-Day 5 Friday September 30th, 2016: -Spent the day visiting with doctors had rehab started taking off the remaining tubes and switching to pills to begin the process to go home?, -Visitors: Arnold & Phyllis Getz, Jeff, Son in Law and Ramon Rodriguez

-Therapy walks 4 steps two times in the afternoon.

-Day 6 Saturday October 1st, 2016: -Therapy: Walked 4 steps sessions 4 times in the morning, -Monty was discharged at 11am. Monty returned home at 4:30pm and met with the assistive living (CBRF) staff.

Monty updated the CBRF Staff regarding his hospital visit. Within a week Monty will start Cardio rehab classes at St Joseph’s Hospital. Monty will spend a few days with Vicki and return home Monday night.

Wednesday October 26th, 2016: TAVR Follow UP; ASLMC: Monty Had echocardiogram and met with one of the TAVR Nurse Practitioners where she asked and provided answers to Monty’s questions in relationship to the TAVR Procedure. He will have a one year follow-up at ASLMC on Thursday, September 28th, 2017. There is still a slight / mild leak between the new and old valves in Monty’s heart. Currently, there is no concern with this leak, healing can take several months. At the one year follow-up appointment if there is still a leak between the two (2)valves then there would be a concern.

Monday December 26th, 2016: TAVR Update; Monty Continues to improve from the TAVR Procedure. Monty has completed 2/3 of Cardiac Rehab at St. Joseph’s Hospital in Chippewa Falls, WI. The future: Currently, Monty is not on a Cardiac Transplant list. Also, he is not considering/ pursuing Cardiac Transplant at this time. The reasons Monty is not pursuing heart transplant is: family / emotional supports are challenging to meet the requirements of any transplant center, Monty would be placed within the bottom of the three groups within a transplant list operated by any transplant centers, The organ (heart) he would very likely receive a heart of poor quality due to the matching of a person’s body size which needs to be extremely similar and the best quality of an organ comes from a donor weighing within 150-200 lbs. Monty feels the risks / concerns for pursuing heart transplant outweighs the benefit of receiving a new heart. Monty will continue to update his Caring Bridge Site with important updates regarding changes to his health status. Monty has greatly appreciated the thoughts, concerns, prayers, visits, and gifts from friends & relatives during this medical process.

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