Help our momma!

As many of you know our mom Sheri (50yrs) has been battling medical issues due to her Esophagectomy back in April of 2018. She wasn’t able to maintain her own weight due to the procedure. They took out her entire esophagus and “created a new one” with her stomach.

She no longer has a sphincter which makes her high risk to aspiration which causes infections like pneumonia and pseudomonas.

From that procedure, her stomach permanently shrunk so she couldn’t eat enough to survive which caused her to have a jejunostomy tube (j-tube) placed. Her new “stomach” then began to be extremely sensitive to foods which minimized what she could eat dramatically.

(April 2022) After years of having the tube she finally weighed 115lbs and decided that she could eat on her own and wanted the j-tube out because it was causing constant irritation, pain and started pussing due to a minor lingering infection.

She then had it removed.

She was slowly loosing weight over months.

(August 2022) She then was at her lowest she ever weighed which was 69lbs. She was skin and bones and had no energy. She started sitting in a chair while taking a shower because standing up took so much out of her. We then decided to admit her to the nearest hospital closest to home which was Hartford Hospital. They evaluated her and stated that she was “failure to thrive” and needed a j-tube placed ASAP.

MDs at Hartford Hospital agreed that her body was so complex that she needs an experienced surgeon. The experienced surgeon was on vacation and would be back in a week. My mom sat in the hospital for that duration (eating in moderation)

The MD finally came back from vacation, viewed her case and said that he didn’t feel comfortable performing a j-tube placement because her anatomy was so complex and severe. He insisted us going to Boston. We left Hartford and drove right to Brigham and Womens Hospital in Boston, Massachusetts.

They admitted our mom immediately. They found a pulmonary embolism which Hartford overlooked.

Mom was scheduled for a Gastrostomy. (J-tube insertion) the following day.

The procedure went well but they couldn’t start her tube feeds until she passed a bowel movement. She did 3 days later. On the 4th day in the middle of the night the muscles around her lungs gave out due to her body being so malnourished which resulted in an emergency intubation.

She was sedated on the ventilator for about 12 days. They stopped the sedation so she could wake up and then decided to remove the tube that was venting her, and decided to CPAP her to see if her lungs could do the work on their own. Things took a turn and me (Taylor), my brother (Tyler), my Uncle Scott, My grandma, and my father all had to make a decision to have a tracheotomy tube placed. We went forward with it as we still had hope for our Mommy.

She was in the ICU at Brigham and Womens Hospital for 7 months and gained 32lbs and almost all of her muscle back. She was using the commode by herself, doing practically everything on her own but still had a trac.

(Bostons staff of Physicians, Nurses, Respiratory Therapists was nothing but amazing! She created a bond with everyone there and everyone was so persistent on getting my mom back to normal and didn’t once give up)

Our Mom was doing amazing and it was now time for rehab as that is the only way to safely have the trac downsized and eventually, removed.

The only rehabilitation center that would accept my mom was Hospital for Special Care in Bloomfield. Our mom safely arrived and trac masked (no ventilator support, just a lot of oxygen through her trac) 2hours from the ride from Boston to Connecticut. Within 15 minutes of our mom being at HFSC one of the Respiratory Therapists upped her trac to a size 6 because they don’t ‘specialize’ in pediatric tracs and weren’t comfortable performing on a patient who had one.

My mom instantly couldn’t trac mask and was dependent on the vent.

Aside from the horrible care our mom received the facility was dirty. The staff was so rude and she was so slowly declining. She lasted 2 weeks there and they then told us she had Osteomyelitis from a bed sore she developed in Boston when she was intubated and has to be on an antibiotic or she’ll develop Sepsis. They transferred her to Saint Francis where SF put her on an 8 week antibiotic combination drug called AVYCAZ. She devolved tremors within 2 weeks of the drug which they couldn’t figure out why she was experiencing them. She then was 100% dependent on the vent. It was taking her 20 minutes to use the restroom. She couldn’t catch her breathe. Respiratory Therapists said “her normal” oxygen saturation was in the 70s and never once did any test/scans to tell us why she was declining. She was given water pills via j-tube because she was retaining fluid from sitting in her bed 23 hours a day. Fluid ended up equaling 23L of EXTRA fluid.

Going on week 7 of the antibiotic she was getting extremely lethargic, couldn’t hold conversations, and ended up having to have a catheter placed of her being so out of it. And doctor and nurses said that was just tired from being up throughout the night.

Later that night she was admitted to Saint Francis ICU because she was incoherent and wasn’t waking up to any commands by anyone.

Our family decided, to stop the Antibiotic (AVYCAZ) & the ICU team decided to stop the pain medicine she was on, morphine.

She was on morphine since August.

You cannot stop a opioid abruptly as a patient will go through withdrawals.

Our mom then began to have seizures for 24 hours. After she stopped actively having seizures and slowly started following commands, they sent her back to the floor she was on prior to that ICU admission at SF , Floor 8-7 after we all announced our concerns that she needs higher grade care and would like her to stay on the ICU floor until they figure out why her breathing has progressively gotten worse.

The doctors taking care of her would update us every day and recently told us that this is our moms “new normal”. Fully ventilator dependent, does not have the strength to walk or use the bathroom on her own, cannot speak, and in pain daily. They have not done one X-ray, CT Scan, or bronchoscopy to prove that this is her normal now.

After the neglect we witnessed her go through, the lack of passion to figure out why she’s declining, her sitting in her own stool for hours on MULTIPLE occasions.

Sheri and her family have mutually decided to send her back to Brigham to restart her road to recovery and get the advanced care she needs.

We left AMA (Against Medical Advice) and had to pay a down payment for the ambulance ride from Saint Franics Hospital in Hartford CT to Brigham and Womens Hospital in Boston, MA. Insurance is unable to cover the cost of the ride as it is not legally ‘medically necessary’ and she’s on a ventilator.

Any donations are much appreciated and if you’re unable to donate please share to as many people as you can.

Each day of her fighting is a day closer to spending most of her days with her 4 grand babies.

Our mom Sheri is a fighter and will not give up and neither will we.