Ella’s legacy: Turning tragedy into an international advocacy network for PVNH

By Yolaine Dupont Ella She was born in Vancouver, British-Columbia at 39 weeks, weighing 5 lbs. and 7 oz. With a nearly flawless APGAR score, her father’s mouth and nose, along with my eyes and full set of dark hair. Just as I imagined she would be, Ella was picture perfect. Still, I had an uneasy feeling. Ella was frail, and her breathing seemed off. I mentioned it to her doctor and nurse, only to be quickly reassured that all was okay. After five days, I took her home. But that upsetting feeling would not go away. The old expression “Mom knows best” turned out to be true. By Ella’s second month, she was admitted to the emergency room and was diagnosed with bronchiolitis, following a few tests. After a short stay, we were sent home. Two weeks later, cutting our trip to introduce her to family short, Ella went back into the hospital. A follow-up x-ray had shown a clear progression of lung disease, and doctors were careful to rule out food aspiration and the more scary diagnosis of cystic fibrosis. But nothing prepared us for what was to come. At 3 months old, Ella “the Zebra” (as she became known) was puzzling doctors. Her lungs were badly damaged, plagued by emphysema. We were told she was too young for lung resection or a transplant, despite the fact she was struggling to breathe. Her saturation would suddenly drop as low as the 40 and 30s. Ninety-six is the normal saturation at room temperature. After spending one month in the hospi...
Source: Thrive, Children's Hospital Boston - Category: Pediatrics Authors: Tags: All posts Diseases & conditions Our patients’ stories Research cytomegalovirus our patients' stories PVNH Source Type: news

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Conclusion: The SVS represents a novel approach for the treatment of severe emphysema with a clinically acceptable risk-benefit profile.Respiration
Source: Respiration - Category: Respiratory Medicine Source Type: research
CONCLUSION: The quality of life of children with kidney transplant is inferior compared to healthy children. The post-transplant period presents better results compared to pre-transplant children. The identification of mental, physical and social conditions related to the quality of life of this population allows for better planning the assistance provided to them. PMID: 30540061 [PubMed - in process]
Source: Revista Brasileira de Enfermagem - Category: Nursing Authors: Tags: Rev Bras Enferm Source Type: research
CONCLUSION: convergent care research was an appropriate method for developing the care protocol, and an important contribution to the approximation between theory and practice. The nursing care protocol was the result of this study and confirmed both the purpose of the research as a professional Master's in acquiring knowledge aimed at improving professional practice. PMID: 30540064 [PubMed - in process]
Source: Revista Brasileira de Enfermagem - Category: Nursing Authors: Tags: Rev Bras Enferm Source Type: research
Abstract PMID: 30539914 [PubMed - in process]
Source: Chinese Medical Journal - Category: General Medicine Authors: Tags: Chin Med J (Engl) Source Type: research
Conclusions: Autoimmune encephalitis is becoming an increasing risk factor of subsequent epilepsy in older people. Older patients with new epilepsy are more likely to respond to antiepileptic drugs, and drug-resistant epilepsy is uncommon. PMID: 30539903 [PubMed - in process]
Source: Chinese Medical Journal - Category: General Medicine Authors: Tags: Chin Med J (Engl) Source Type: research
Conclusions: The availability of HCV-positive organs may expand the donor pool and decrease waitlist times and mortality. These data highlight the need for patient education towards use of these organs.Am J Nephrol 2019;49:32 –40
Source: American Journal of Nephrology - Category: Neurology Source Type: research
No abstract available
Source: Pancreas - Category: Gastroenterology Tags: Letters to the Editor Source Type: research
Authors: Rickels MR, Robertson RP Abstract Pancreatic islet transplantation has become an established approach to β-cell replacement therapy for the treatment of insulin deficient diabetes. Recent progress in techniques for islet isolation, islet culture, and peri-transplant management of the islet transplant recipient have resulted in substantial improvements in metabolic and safety outcomes for patients. For patients requiring total or sub-total pancreatectomy for benign disease of the pancreas, isolation of islets from the diseased pancreas with intrahepatic transplantation of autologous islets can prevent ...
Source: Endocrine Reviews - Category: Endocrinology Tags: Endocr Rev Source Type: research
Authors: Borderie VM, Touhami S, Georgeon C, Sandali O Abstract Objective: Big bubble (BB)-deep anterior lamellar keratoplasty (DALK) has become the reference transplantation technique for corneal stromal disorders. Type 1 BB is the desired aspect but it is not constant. We aimed to determine the predictive factors of type 1 BB success. Methods: Observational cohort study including 77 consecutive eyes of 77 patients undergoing DALK by one surgeon at a single reference center without any selection. Clinical and spectral domain optical coherence tomography data were collected pre- and postoperatively. Results...
Source: Journal of Ophthalmology - Category: Opthalmology Tags: J Ophthalmol Source Type: research
ConclusionThe myocutaneous SAFF represents a safe and reliable flap for tongue reconstruction after salvage glossectomy with satisfying functional outcomes and low donor side morbidity.
Source: European Archives of Oto-Rhino-Laryngology - Category: ENT & OMF Source Type: research
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