Welcome to our CaringBridge site for Mr Robert!. We've created it to keep friends and family updated. We appreciate your support and words of hope and encouragement during this time when it matters most. Please feel free to pass it along to those who know and love Mr. R!
So for the past two+ weeks Robert has had an intermittent nose bleed .. nothing major, more annoying than anything. We figured it was a combination sinus infection/allergies, so gave him allergy meds and kept an eye on him. Last Sunday his nose was noticeably swollen with no history of trauma. We waited it out a day, and still the swelling remained, so Paul and I investigated further (ie. held him down and shined a flashlight up his nose!). We saw SOMETHING in there...some mass of tissue. We were able to get an appointment with the ENT who has reconstructed his canaloplasty for later that week. He looked up there and said, "umm I'm not sure what that is, but it shouldn't be there." He ordered a CT for the next day.
CT Scan -- after innumerable delays and fights between the radiologist (who wanted sedation and contrast) and the ENT (who just wanted a quick picture) .. we finally had a CT scan under sedation with contrast (the radiologist won!) Thank goodness because as she read the films after we had already been sent home, she urgently called me in the car and said that a big vessel was feeding this lesion and that he should not by any means disturb (ie. pick it!) or he could have a massive hemorrhage. Paul and I looked at each other and said, "WTF? They sent us home knowing that??" We called the ENT when we got home who said he wanted an MRI to see more. Unfortunately no one seemed willing to schedule one emergently. We took a friend/college PNP (pediatric nurse practitioner)'s advice and drove to the ER (at this point his nose was oozing bright red blood). We were immediately brought to a room and in walks a resident from Regions who knew Paul! He barely introduced himself and said, "well, we've already reviewed the images from today and are going to admit him, type and cross him for a few units of blood just in case, and get the ball rolling on this thing as we are concerned about bleeding and his airway (let alone the pain of having a swollen nose). He then asked how much we knew about the mass. We just said we knew it was feeding on a vessel. Well he then informed us it was feeding from a branch of his carotid artery !!! Hence the reason the radiologist was panicked that we were sent home! So, we had blood draws and an IV started in the ER (with the benefit of nitrous -- YAY!) and had several very nice residents and staff doctors visit us. We were admitted to short stay unit where we awaited an MRI.
The MRI on Saturday involved general anesthesia. He did well with the intubation and had a very responsive MDA and CRNA who were concerned about how difficult of an intubation he is ... so they were very proactive and brought special intubation equipment to the MRI room to make certain his airway would not be compromised. He did well, but unfortunately the MRI didn't show anything new and our ENT on-call doctor wanted us sent home to await a clinic visit. We could tell the residents and staff doctors at Children's were not at all happy with this plan so they strongly encouraged us to consult Dr. Rimmell (Children's Hospital ENT). He came to see us on Sunday morning and basically said that "thing needs to come out as I've not seen anything like it in 25 years and its acting very aggressively." He immediately got the ball rolling on lots of things.
After lots of delays and miscommunications among the in--house staff about scheduling procedures .... Here is what I posted last night on Fbook about the plan:
"Update: Robert was scheduled to have the angiogram/embolization on Wednesday but, according to the residents, Dr Rimmel moved mountains and got radiology to sneak him in tomorrow at 1 pm. His nose is infinitely bigger (he's on scheduled narcotics now and is having more difficulty breathing and pain, his skin is breaking down as it can't keep up with the growth of the lesion, and his mood has been much more labile) Dr. Rimmel is concerned about this so he wanted to get things moving fast. He will most likely end up in intensive care (PICU) post procedure as he needs to lay flat for 6 hrs post procedure (which with Robert will require sedation). Surgery possibly on Thursday.
Dr. Rimmel spent a long time talking with Paul (I'm trying to complete a shift here at work before everything starts happening this week). He's been very frank with us and seems to be warning us that we are heading down a scary road. He is having the Chief of Radiology perform the embolization as they are long-time colleagues. He's very concerned about bleeding as the last time he had a patient with something remotely like this, the outcome was dire. He also wanted to warn us that it is not behaving like the list of possible benign lesions it could be and is concerned and seems to be very aggressive. So we are preparing for the worst and hoping for the best.
) and the big boys have been amazing. Bailey called to check on him today, Joe sat with him at the hospital so Paul and I could run home to deal with Jack and the dogs. It's hard feeling like we are spread so thin and trying to give everyone the attention they deserve. I hope to get a CaringBridge website up tonight or tomorrow to keep you all better updated. We SO appreciate all your thoughts, prayers, texts, phone calls, visits, etc. Thank you!"