Rate me dumb or late, but what does Tinslee suffer from? I admit that I am a bit too squeamish to search the thread, what I've seen on the first few pages was enough.
It sounds rather improbable to me that she codes on every external stimulus, but I can imagine that she loses consciousness. Maybe I have my terminology wrong, though.
"She was born with a rare heart defect called an Ebstein’s anomaly and has undergone several complex surgeries at Cook Children’s in an effort to improve her heart function. Further complicating matters, she also suffers from chronic lung disease and severe chronic pulmonary hypertension."
"She requires significant sedation to help prevent a pulmonary hypertensive crisis, which can be brought on by even minor agitation."
"T.L’s multiple diseases cause life-threatening problems. Almost every day, and often multiples times a day, T.L. has a “dying event” that mandates aggressive medical intervention. These dying events are typically brought on by agitation and can be triggered by routine CICU care such as a daily chest x-ray or respiratory treatment, or even routine baby care such as a diaper change. Sometimes they occur for no apparent reason."
" Because T.L. cannot sufficiently oxygenate her body on her own, she has spent most of her life sedated and paralyzed in order to limit the amount of oxygen her body has to expend to keep her alive. This treatment – which I understand the court has ordered that we continue – has caused T.L.’s body to significantly deteriorate. T.L.’s limbs have become severely contracted. She has developed irreversible drop foot. She is now locked into a “frog-legged” position, and her hips cannot rotate or bend. When I try to draw T.L.’s knees together for therapy, it causes her significant pain. This contracture is so severe that it is impossible for some nurses to change her diaper without assistance, because they cannot grasp her ankles with one hand. We have placed splints on T.L.’s hands to prevent her from making fists.
Because of her treatment, T.L. has never eaten solid food. As a result, her teeth have been unable to erupt normally. She has only one or two teeth. Teeth that cannot erupt have caused cysts and pustules that rupture and bleed.
Her treatment has caused other issues: T.L.’s stomach is swollen with fluid. It is the size of a bowling ball—very abnormal on an 18-month-old toddler. She has significant cyanosis of her extremities. As a result, her skin in those areas is a blue-purple tint and is often mottled.
Because T.L. is isolated—alone 99% of the time (except for medical staff)—afraid, and in pain, I always talk to her when I am caring for her. When I perform a routine neurological assessment, T.L.’s pupils are reactive but she cannot track and follow movement. However, when I touch her, she jolts—her eyes wide—and is panicked, anxious, and agitated. The first thing I say is always, “I’m sorry,” because I know I am causing her pain by touching her. Tears run down her cheeks, but due to the paralytics she is on, her face cannot contort, and she cannot actively cry. If her pain persists, we give her additional medication to try and alleviate this discomfort. "
Here's all the legal data on her:
https://www.thaddeuspope.com/medicalfutility/tinsleelewis.html
Court documents show medical proof that she dies multiple time a day.
Here is her medical breakdown from the case:
- Tinslee is in dire condition.
- Because she cannot properly oxygenate her blood, Tinslee is kept on a ventilator, has three tubes down her nose, has multiple intravenous lines for the administration of medication, and is permanently attached to four additional machines to monitor various biological functions. She is swollen and carries more than two liters of fluid. Tinslee requires more than a dozen medications daily. To keep her alive, doctors and nurses must keep her on a constant stream of painkillers, sedatives, and paralytics. As a result, Tinslee is pharmacologically paralyzed at all times. Tinslee’s current appearance is very unlike the smiling days of her first months.
- Medical treatment is futile.
- Tinslee cannot be cured or her condition treated. She has months to live. Even with medication and support, Tinslee has “dying events” 2-3 times per day. When she is in distress, Tinslee crashes and medical intervention is immediately necessary. While the exact treatment varies, it includes at least repeated forceful manual inflation of her lungs combined with various IV medications. A nurse must stay in her room with her 24-hours a day to monitor her vital signs. As Dr. Duncan testified, providers can no longer do anything for Tinslee; all treatment now is simply done to her.
- Life-sustaining intervention causes Tinslee to suffer, with no hope of recovery.
- As Dr. Duncan and Ms. Lane testified, Tinslee is suffering and in constant pain. The fact that her brain and limbs are healthy makes her situation even more excruciating, as Tinslee is aware of her situation, can feel pain, and would like to be active. Forcing her to lay still, paralyzed and sedated, is – while necessary to keep her alive – simply cruel. The medical treatment itself is causing Tinslee to suffer. Every time that Tinslee receives treatment – whether medication, an examination, or simply a readjustment of her position to prevent bed sores – she reacts to the touching as pain. Many times, the stress that such treatment brings causes Tinslee to crash. The doctors have all stated that continuing to treat Tinslee violates their Hippocratic Oath as they are hurting her for no medical benefit; rather than violate their ethics, as is their legal right,4 numerous nurses at Cook Children’s have simply refused to care for Tinslee.
- No other hospital or doctor will agree to treat Tinslee.
- Although Cook Children’s has spoken with dozens of hospitals and doctors about Tinslee, no one has disagreed with their diagnosis and no one has been willing to treat her. Even with the active phone tree of multiple volunteers provided by Texas Right to Life and Texas Fragile Kids, no healthcare provider has come forth. Indeed, just a few days after the hearing ended, Boston Children’s hospital formally declined to accept Tinslee as a transfer.
