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Epidermolysis Bullosa Advocate 4 my son. Author, graphic artist, photographer, blogger, genealogy buff & obsessed Sassenach.
Ever since Nicky has started having trouble with the g-tube we had to change our whole routine. While some are small things, the biggest change has been how much weaker he’s become, so, instead of him coming to the couch to change bandages, I go to him
It’s disheartening when local Doctors, of any kind, refuse to see the patient because they don’t know anything about the condition and can’t (or won’t) take the time to learn about it to accept you as a patient so they have to refer you out to a larger city or even out of state. I constantly keep my eyes posted to every clinical trial being done in hopes that maybe, just maybe, today might be the day that someone can help take away his pain. We can’t leave him alone as there are a lot of things he cannot do by himself, there needs to be time put aside for bandage changes and g-tube feedings. It’s his love for life, how much he loves his family, and his determination to find a silver lining in even the hardest of times.
While season 1 told the story of Cosimo de Medici (Madden), season 2 revolves around his grandson, the famous Lorenzo il Magnifico, played handsomely by Daniel Sharman. I’ve often said that the way they teach history in school is the most boring way ever, and now what happened in the Duomo in the season finale, will forever be etched in my soul. This will be the book Season 5, which hasn’t even started filming yet, will be based on. I don’t know when Season 5 will air, my guess is sometime in Spring 2020, but at least I know I will be done and ready to “see it” by then.
Late last year Nicky started having issues with his G-tube. The tube was leaking, it was painful and Nicky could no longer stand to be fed through it. The only GI that Nicky has ever seen was at Stanford because they are the only Hospital familiar with his condition, so I made arrangements to take Nicky there for emergency surgery for his g-tube. After extensive talks to the Doctors we came to the conclusion that the g-tube Stanford put in was perfect and we should not change it out, the cause of the pain is mostly the wound in the abdominal wall that is trying to heal from all the leakage of the gastric fluids that occured before our trip to Stanford.