Ongoing Hospitalizations and Doctors Appointments
MayRose was born three months premature at Sunrise Childrens Hospital NICU on May 14, 2008. She remained there until she was discharged as being a "healthy baby" on August 2, 2008. During her first three months at home, she began tracking and had an MRI that showed her brain to be normal. On October 29, 2008, she went into anemic shock and was rushed to the Summerlin ICU around the corner from her house. During her stay at the Summerlin ICU, it ws determined that she had suffered diffuse brain damage from the anemic shock. As a result, MayRose was admitted to Denver Childrens Hospital Pediatric Rehabilitation unit where she was seen by a Physiatrist (rehabilitation medicine doctor) and several rehabiliation specialists.
MayRose is on numerous medications.
As a result of MayRose's various challenges during the year of her birth, she was hospitalized eight times in 2009, including in January, twice in February, March, May, July, August and September. She also was hospitalized in January 2010. These hospitalizations were generally due to her contracting a virus which raised her body temperature and white blood count. She would remained in the hospital, on average, for five days at a time until her white blood count and temperature returned to normal. During April and May of 2011, she was hospitalized for six weeks for dismotility, and received two weeks of outpatient care at Los Angeles Childrens Hospital while staying in the Ronald McDonald House. In November of 2012, MayRose was hospitalized at Denver Childrens Hospital for a few days after having double hip surgery. She wore a full body cast for 6 weeks after the surgery. In 2013, MayRose was briefly hospitalized at Los Angeles Childrens Hospital after having her first, and so far only, petite seizure. In October 2014, MayRose was hospitalized at St. Rose Dominican Hospital with an e coli urinary tract infection which spread to her kidneys. She also was treated for a psuedomonas infection in her blood that most likely was caused by transfer through her port during her last blood transfusion at Summerlin Hospital. MayRose's liver also was damaged by the pseudomonas infection. After being on Sulfameth-trimeth antibiotics for 7-days to treat a citrobacter UTI, on December 24, 2014, MayRose was hospitalized at St Rose Dominican with Pancreatitus, C-Diff and another UTI ,caused by klebsiella. She was flown by medical transport to Los Angeles Children's Hospital after she experienced Disseminated Intravascular Coagulation (DIC) and fluid in her chest requiring oxygen. These conditions resolved 48 hours after Intralips were discontinued. MayRose remained hospitalize until January 11, 2015, after being placed on a low-fat high calorie diet, and replacing medications with a pancreatitis adverse effect. Concerns remain regarding chronic UTIs, dismotility and the potential for chronic pancreatitis. MayRose was hospitalized from 2/6 to 2/9 for UTI caused by E Coli Extended Spectrum, Beta Lactamase.
MayRose's pediatric brain injury caused developmental delays, cortical visual impairment, and makes her prone to having seizures, although she has had only one verified seizure. In addition to receiving rehabilitative therapy five times a week, MayRose has multiple doctors throughout the year. She is seen regularly by multiple care-providers, including a Pediatrician, Hematologists (DBA), Gastreoenterlogists (reflux), a Physiatrist (rehabilitation), a Neurologist (brain injury), an Orthopediologist and Endocrinologist (bone development), a Nephrologist (liver and kidneys), Urologist (bladder), and Opthomologists (visual impairments). She also is followed by an orthotic specialist who fits her for leg braces prescribed by her physiatrist. Her caregivers are strong supports of the Sarah Jane Brain Foundation.
MayRose is on numerous medications.
As a result of MayRose's Diamond Blackfan Anemia, she must receive a blood transfusion once every three weeks for the rest of her life. She has a device called a Port that is located under her skin which is accessed in order to provide the transfusions. She also has a G-tube in her stomach to help her receive the appropriate amount of nutrients because her brain damage has affected her ability to swallow foods and liquids. Although she loves to eat, it takes her longer than most children, thereby requiring a baseline amount of formula to be provided through the G-tube.
MayRose is on numerous medications.
As a result of MayRose's various challenges during the year of her birth, she was hospitalized eight times in 2009, including in January, twice in February, March, May, July, August and September. She also was hospitalized in January 2010. These hospitalizations were generally due to her contracting a virus which raised her body temperature and white blood count. She would remained in the hospital, on average, for five days at a time until her white blood count and temperature returned to normal. During April and May of 2011, she was hospitalized for six weeks for dismotility, and received two weeks of outpatient care at Los Angeles Childrens Hospital while staying in the Ronald McDonald House. In November of 2012, MayRose was hospitalized at Denver Childrens Hospital for a few days after having double hip surgery. She wore a full body cast for 6 weeks after the surgery. In 2013, MayRose was briefly hospitalized at Los Angeles Childrens Hospital after having her first, and so far only, petite seizure. In October 2014, MayRose was hospitalized at St. Rose Dominican Hospital with an e coli urinary tract infection which spread to her kidneys. She also was treated for a psuedomonas infection in her blood that most likely was caused by transfer through her port during her last blood transfusion at Summerlin Hospital. MayRose's liver also was damaged by the pseudomonas infection. After being on Sulfameth-trimeth antibiotics for 7-days to treat a citrobacter UTI, on December 24, 2014, MayRose was hospitalized at St Rose Dominican with Pancreatitus, C-Diff and another UTI ,caused by klebsiella. She was flown by medical transport to Los Angeles Children's Hospital after she experienced Disseminated Intravascular Coagulation (DIC) and fluid in her chest requiring oxygen. These conditions resolved 48 hours after Intralips were discontinued. MayRose remained hospitalize until January 11, 2015, after being placed on a low-fat high calorie diet, and replacing medications with a pancreatitis adverse effect. Concerns remain regarding chronic UTIs, dismotility and the potential for chronic pancreatitis. MayRose was hospitalized from 2/6 to 2/9 for UTI caused by E Coli Extended Spectrum, Beta Lactamase.
MayRose's pediatric brain injury caused developmental delays, cortical visual impairment, and makes her prone to having seizures, although she has had only one verified seizure. In addition to receiving rehabilitative therapy five times a week, MayRose has multiple doctors throughout the year. She is seen regularly by multiple care-providers, including a Pediatrician, Hematologists (DBA), Gastreoenterlogists (reflux), a Physiatrist (rehabilitation), a Neurologist (brain injury), an Orthopediologist and Endocrinologist (bone development), a Nephrologist (liver and kidneys), Urologist (bladder), and Opthomologists (visual impairments). She also is followed by an orthotic specialist who fits her for leg braces prescribed by her physiatrist. Her caregivers are strong supports of the Sarah Jane Brain Foundation.
MayRose is on numerous medications.
As a result of MayRose's Diamond Blackfan Anemia, she must receive a blood transfusion once every three weeks for the rest of her life. She has a device called a Port that is located under her skin which is accessed in order to provide the transfusions. She also has a G-tube in her stomach to help her receive the appropriate amount of nutrients because her brain damage has affected her ability to swallow foods and liquids. Although she loves to eat, it takes her longer than most children, thereby requiring a baseline amount of formula to be provided through the G-tube.