Update on GuiliAnna medical: she had a Transplant 4/1/21. We were doing good until
She was taken by ambulance 11/21/21 to Luries for fever and severe pain. On Monday 11/22/21 we did a biopsy and found out she had lymphoma PTLD on 11/23/21. She had her first chemo on Thanksgiving 11/25/21. Well on Tuesday 11/30/21 GuiliAnna had to have emergency surgery because her new intestines perforated. Well t
his was the beginning of many surgeries over a month and her being on life support breathing ventilator. On 12/25/21 she got to move out of ICU and into a acute room. She had a total of 5 surgery and will need another in the future. We haven’t started chemo again yet because she not well enough to start again. Guilianna was born at 32 weeks because she stopped growing at 25 weeks, due to her mommy having IGUR. She was born at 1 lb 13 oz. She was in the NICU for 10 months. She had to have part of her small intestine removed due to getting NEC. She has Hydrocephalus, hearing loss, eye loss and we are waiting on genetic testing. Guilianna struggles daily with a non-finctioning GI tract, failure to thrive and many small medical problems. Guilianna has a central line (IV) and a feeding tube. NEC (Necrotizing Enterocolitis) is a condition where the intestine becomes infected and can die. Due to the NEC and being born premature Guilianna has a rare disease called Shortgut Syndrome. Short bowel syndrome (SBS, also short gut syndrome or simply short gut) is a malabsorption disorder caused by the surgical removal of the small intestine, or rarely due to the complete dysfunction of a large segment of bowel. Most cases are acquired, although some children are born with a congenital short bowel. It usually does not develop unless more than two thirds of the small intestine have been removed. SBS has been designated a rare disease by the EMA,[1] and is eligible for orphan drug designation according to the U.S. Food and Drug Administration (FDA).[2] There are roughly 3500 adults and 9000 children with SBS in the USA alone. Her twin, Graciela weighed 3 lbs 13 oz. We are in the process of watching and checking her development and growth. Donation can be made by PayPal or zelle. Aprilanderson55@gmail.
