Johnson Family Medical Cost

I am started this for a co-worker/ friend and her family. This is written by her.
On April 28th our lives( me, my husband and our children's) changed. It was like any other day, I was getting ready for work and my kids were just getting home from school and I got a call that my husband was being taken from work parking lot to the ER by ambulance with shortness of breath and dizziness, so thinking it was not much, maybe an allergic reaction to something. I had my kids( 2 boys age 20 and 16 and 1 daughter 13)to follow me to hospital so I could leave after checking on their dad before I headed to work. We arrived to the ER and were greeted by a doctor and nurse, they took us to a small waiting room and the doctor had the kids to step out, " I knew this wasn't good". I was told "your husband is alive but is very sick," continued with he has had a massive heart attack with pulmonary embolism. The medical team worked a long time on him to get him back. He was intubated/vent, ecmo, kidney dialysis, tons of iv lines/meds. Said you better get anyone here that thinks a lot of him, family, friends.... because he may not make it through the night. He may one day walk out of this hospital, he may be neurologically devastated or he may die. Asked if I wanted to tell the kids or him. I was so in shock, crying, like in a cloud at this point. The doctor brought the kids back in and told them the awful news about their dad, they all began to cry. Told us we would be taken to the critical care unit to see their dad in about 20 minutes after transferred from ER, said to expect him to be really swollen looking, from all the fluids he was given and different color, he won't look like your dad/husband. We were taken to the critical care unit where pastoral care was waiting for us outside the room, he held our hands and prayed with us. It was overwhelming all the machines, iv's.... we all stood around him and cried. He made it through the first night! The doctors said everyday, he is a very sick guy and just have to go day by day. I stayed at the hospital, watching my husband for days, just lay in the same position, eyes closed (wondering if he was in there or if he did open his eyes would he be neurologically devastated), paralyzed, breathing by a machine and heart/lungs functioning due to an ecmo machine, kidneys functioning by dialysis machine). It was explained to me how great an ecmo machine is but also how dangerous they can be, can cause more clots to form, so needed to try to get off in about 5 days, they took him to operating room and attempted, was unable to take off. More disappointment. Another week went by and they took him back to the operating room, got the ecmo off after several hours but then was told they would have to do open heart surgery, because he had clots in his right ventricle that at any point could break off and he would die. Surgery was done and the doctor said they removed a cup of clots from his heart and placed a heart filter/ 3 chest tubes. At some point either during surgery or after he had a stroke, unable to move his right side, had high fevers, was not looking good at all. Each day the doctors kept saying baby steps. Again wasn't sure if he was going to make it. After about 3 weeks he was finally extubated, he was confused, couldn't move his right side. Each day day we kept being told baby steps. He continued each day to fight for his life, continued on kidney dialysis, chest tubes, iv meds. Physical therapy and respiratory therapy worked with him all the time. He at this point was known as the miracle man around the hospital by everyone, from housekeeping to nurses and doctors. After about a month he was transferred to inpatient rehab facility for a week and sent home after 8 days. Was home for 2 days and then readmitted to hospital for a heparin drip, due to clot in right leg bigger and had moved upward in his leg. Was there for another week. Home again, getting hemodialysis, PT/OT and speech therapy and frequent blood draws for blood thinning medicine, and frequent doctor visits. Fortunately after a couple of weeks being home was able to get off dialysis (insurance said where we went for dialysis was out of network and won't pay- even though this is where we were sent, authorized per social work by our insurance) . A battle with insurance everyday!! July 16 my husband was taken back to hospital with abdominal and chest pain, did scans said gallbladder was not functioning. So upset he had to stay at hospital again, had to be off blood thinner for a day and then gallbladder removed/drain placed. As the doctors said this is a small bump in the road in relation to what you have been through. Got to come home on his Birthday- July 20th. I asked what he wanted for his birthday and he said, "I got it, I'm able to be here and celebrate another year," which is so true!!! We definitely are thankful everyday to all the Great medical staff at St. Luke's Hospital and number one God!!! My husband is a true miracle. This has definitely opened our eyes to so many things. You Never know when things like this will happen. He continues with outpatient therapy, labs and frequent doctor visits. Stacks of bills everyday come in the mail and insurance calls. Really becomes overwhelming at times!!! Again just thankful everyday my husband and my children's dad is still here with us!!
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Organizer and beneficiary

Christina Beste 
Organizer
Saint Charles, MO
Denise Johnson 
Beneficiary
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