The formula to Bianca's second chance at life goes as follows:
• Moderate acquired apnea - side effect from morphine dosage to alleviate pain - caused her to stop breathing twice in 48 hours - was bagged and once again she started breathing.
• Narcotic-induced depression - she was switched to methadone which dropped her pressure and made her lethargic.
• Severe Pseudomonas sepsis - infection so severe she had to be placed on IV administered antibiotics. Two catheter lines (Broviac) - at this time we almost lost her...11 days after birth. She was placed on a 21 day cycle of antibiotics. Half way through she pulled out the line and the second one was inserted.
• Mild thrush - due to prolong administration of antibiotics - overgrowth of fungus developed.
• Severe congenital Epidermolysis Bullosa diagnosis - confirmation received of her clinical diagnosis
• Moderate acquired anemia - due to the trauma of dressing changes and all the denuded areas of skin there was a lot of blood loss. This eventually led to a blood transfusion.
• High cal nutritional intake requirement - Special high calorie formula (24 Cal) was provided which helped in the steady weight gain during stay at the NICU.
• Possible cataracts - A thin membrane was noted over sections of the eyes. Possible trauma created an early onset of cataracts.
• Skin biopsy
• UVC placement
• Skin grafting on legs
• Skin grafting on hands
• Skin grafting on hands (2nd attempt)
• V.A.C. - Vacuum Assisted Closure on legs
• UAC placement
• Central venous catheter (cut-down)
• Second skin biopsy (punctured section on top right thigh)
• Lumbar puncture (possible infection that was life threatening)
• Central venous catheter (2nd attempt cut-down)
• Blood transfusion
Days in the NICU
Total billed by insurance carrier
- $229,716 - up to October 16 - additional claims were received that quickly skyrockets that number passed $250K including the genetic testing a few months later that was an additional $4,500.
So in the twisted humor that we have slowly mastered in the last 9 years we can safely say that we have a million dollar child on our hands. Gives a whole new meaning to the term "high maintenance".
Next blog I'll give you some links to check out...awareness is the key to conquering this genetic condition. The numbers I listed above is for a mild-moderately involved child - I cannot begin to imagine nor do I pretend to know what a more medically involved child, who's much more severe than Bianca, can cost the average middle to low income family.
P.S. I invite you to Google some of the words or phrases you might not understand from the above. The more we spread awareness and understanding the more compassionate and willing our society will be to learn about our "not so perfect but very blessed" life. Not taking things for granted is the only thing we live for nowadays!
|She use to love her Little Einstein videos|