A Scary ICU Experience
Years ago, an event caused us PTSD. Jessie, 16 years old, was in the hospital’s intensive care with severe respiratory difficulties for 2 months. However, the hospital wanted her to be moved out of the intensive care unit.
She was in serious condition. They had to trach her. She was on continuous oxygen. A specialized Clinitron® Movement bed, that rotated from left to right to alleviate her being in one position for too long, was ordered to help prevent bedsores and congestion.
A tracheostomy procedure
The doctors needed to perform a tracheostomy to aid in her breathing. Subsequently, when the surgeon performed the trach, the hospital blasted a loud voice message calling for a CODE BLUE [respiratory] and CODE RED [cardiac] throughout the building.
Instantly, they directed the emergency medical specialists to rush to intensive care room number 4! Meanwhile, a battalion of the critical care team charged into that room.
Like commandos, pulling a crash cart to perform life-saving care, they went to work. Oh no, that’s the room where they were performing Jessie’s surgery!
We began to panic about complications
Consequently, my wife and I thought the worst and started to panic! The door abruptly closed, and they started to work feverishly on the patient. What felt like an eternity, they valiantly were trying to save a life!
Subsequently, at 5:15 A.M., my wife and I were seated in the waiting room, very distraught and crying. Meanwhile, along comes a nurse, Shirley, coming on duty.
Hesitantly, she peered into the waiting room and came over to us to find out what was going on and to comfort us. I wasn’t a religious person at the time, but I told her about the events going on.
Thankful that our daughter was okay
She asked us if it was okay to pray for Jessie. I told her that I was probably not of the same religion. She told me, “God hears all prayers.” I agreed. So, we prayed.
A few minutes later, Shirley came back to tell us that the codes were NOT called for Jessie. A miracle!
She notified us that the codes were called for the original surgeon who had suffered a heart attack while performing the tracheostomy. A new surgeon was now in the room completing the surgery.
Another God-incidence occurred when Shirley was assigned to Jessie’s care. The compassionate care that Nurse Shirley showed Jessie and all my family was a blessing to all of us. Jessie survived this ordeal. Shirley was an angel.
The suggestion of a nursing home
Now, several weeks later, there were stirrings around the intensive care unit that Jessie was there “too long,” but she still needed special care, and was going to be moved! Moved?? Where??
Well along comes a doctor that I did not know, who informed me that Jessie was going to be moved to his nursing home. He already checked that both my wife and I each had a $1,000,000 medical insurance coverage.
He said that was enough to care for her there. “You should put her there and get on with your lives. You are both so young,” he further stated, still pitching the facility that he owned.
I asked him who sent him. He said the insurance company. He then went on to say that it was more “cost-effective” to move her to his nursing home. I told him that I was Jessie’s healthcare surrogate and I did not authorize him to be involved with Jessie’s care.
Caring for our daughter at home
With the advice from Jessie’s doctors, my wife and I decided to take Jessie home. All the equipment that she had in the intensive care unit was ordered.
The hospital trained us on trach care, suctioning, ventilators, taking vital signs, administering oxygen before being discharged. We had a complete medical team in place. Our home was very close by to the hospital, just in case.
Miraculously, Jessie survived. We continued praying.
In sum, miracles, do happen. Firstly, Jessie survived. Secondly, I became a true healthcare surrogate for Jessie. Lastly, Both my wife and I matured into real-life adulthood from this experience.
Which emotional aspect of SMA do you find most difficult?