As many of you know, my brother has been struggling with an elusive illness for several months. This last week it came crashing into his body. This post will hopefully explain and clear up what I haven't been able to put into 140 characters at a time.
October 2015 Kauai Hawaii. Was very cool that my brother and sis in law decided to take a 2 week vacation to Kauai. My sister and I would meet them during the second week and hang out. But during that week, he started to have severe back aches, between his shoulder blades, and the chills. Like he had the flu. So they called a doctor who was nice enough to come to their condo and look at him. He too, thought he had a bacterial infection or a flu, so prescribed antibiotics. This seemed to help a bit so we all went along our merry way. When he got home, he continued to have pain. Couldn't sleep, was uncomfortable and started to have fevers. So back to his GP he went. Test after test after test. CT scans and an MRI. And finally they figured out that he had an Aortic Aneurysm. They are usually caused by some sort of blood infection that weakens the wall of the aorta and a bubble forms. This is a very serious issue so he was scheduled to have a stent inserted and the bubble or aneurysm cut off. This just happened to be Thanksgiving. So he has the procedure and goes home with IV antibiotics for 6 weeks then oral after that. Awesome - except after the 6 weeks he starts to have more pain again. Over several weeks he has pain on and off but they keep pumping him with antibiotics. This goes on for a while, with it getting better then worse then better. He continues to be tested for everything under the sun - autoimmune disease, etc. Nothing. Finally he says enough and they refer him to UC Davis Medical Center. First meeting with the Dr and he sees that the infection that was supposed to have been removed with the aneurysm is still very much alive and starting to cause damage to his aorta. So here is what happened - a piece of plaque in his bloodstream got stuck or wedged in the aorta and the bacteria got caught behind it. So it kind of festered there causing the aneurysm. When they put the stent in, they trapped the plaque with the bacteria between the aorta wall and the stent. So it couldn't get 'flushed' out with the blood like most of our bacteria does. This was causing major damage to the aorta and the Dr was very concerned. So he was scheduled for surgery to have his aorta replaced with cadaver material about a week later. Now we are at Easter time. Finally he has the 6 hr surgery and it goes great. The aorta is replaced and looks good. Except while my bro is being operated on he starts to bleed out of his mouth. This concerns them so they scope his stomach to see if he has a bleeding ulcer or something. Turns out the infected aorta either infected or wore a hole in the esophagus. Apparently these 2 things are VERY close to each other in the body. This turns out to be very alarming. This is when they ask all of us to go to a conference room to wait for the doctors and hear the next steps. Never a good sign.
There are 2 options when a hole in the esophagus is found - A) remove entire esophagus, have a feeding tube, and a bag to catch everything you swallow or B) attempt to suture the hole down the throat with a camera then put a stent inside to protect the sutures on the outside of the stent. This option is not as fool proof but was good for the current circumstances. Option B is selected as option A is another 5-6 hr surgery and they didn't think that was a good idea. So they go in, suture up the esophagus, put the stent in and let him heal. The first week he can't eat or drink ANYTHING or swallow. So far so good. They put some contrast in to see if there is any leakage - none. YAY! This means he can start drinking and having very soft foods. A few more days and he is home from the hospital. He has some discomfort as the esophagus is a muscle and it keeps trying to push the stent down like a piece of stuck steak. You know the feeling. But he is recovering and feeling okay.
Fast forward to last Saturday April 30th. He is at home not feeling very well. Kind of pale, lethargic. He gets up to go to the bathroom and passes out. They get him to the bathroom and he has very bloody stools. Sis in law calls 911 AND demands a helicopter to take him to UC Davis. Chopper comes and off he goes. He is admitted to ICU again and the Dr's discover that his esophagus is leaking. Not good - now decision needs to be made to do option A. The next day the Dr staff is still contemplating how to attack this problem. My sister and I go down and visit with him before his surgery and you can tell he doesn't feel well. We go to the waiting room. His wife goes to have breakfast. 'CODE BLUE CTICU, CODE BLUE CTICU'. My sister and I look at each other and say 'Hope that isn't for John'. About 10 minutes later a nurse comes to waiting room and explains it WAS John. He started to violently throw up blood. She says they are trying to figure out what is happening and stabilize him and get him to surgery. (I call sis in law and she is on her way back as soon as she can.) She leaves and comes back some minutes later and says now that his heart has stopped and they are doing CPR. And she is not very optimistic. We are stunned. Literally stunned into silence. She asked us if we wanted to go in and see him-we both said no. We didn't want to remember him like that. After 20 minutes of CPR they get him stable enough to take him to surgery. Turns out the esophagus had either some infection or it got to close to the aorta and opened up the sutures and it started to bleed. So much that it pushed blood thru the hole in the esophagus and out his mouth. And into his body cavity. This is very, very bad. In order to stop the bleeding, the surgeons insert a balloon thru the groin and inflate it above the fissure, stent it, then release the balloon. But when this happens blood flow is stopped to the rest of the body including the brain, spinal cord, other organs, etc. If it is too long, these things will be adversely affected. Before the surgery was completed, they noticed his belly was distended. So they opened up his belly and drained off lots of blood and fluid then decided they would leave his belly open to let the swelling go down. Adding another complication. So surgeries are done, he is intibated (breathing tube down his throat) and back in his room. After 2 days, they go in to the operating room and flush his belly and partially sew him up so he is open anymore. That is good.
In the mean time, Dr's are doing neurological testing to check his brain, etc. He can follow commands, move his hands and legs. Yay.
Now the hole in the esophagus must be addressed. The biggest problem is that it still has infection in it. The infection will do more damage than anything else. There is a sense of urgency now to get the stupid esophagus out and gone. So May 5 he goes back into the operating room and has his entire esophagus removed. This surgery is another 7 hrs long. It is an interesting process in that they put a little spit bag on the outside of his throat and he has a feeding tube. They also chose to pull his latissamus muscle from his side and connected it to his aorta. This helps with blood flow and antibiotic distribution for quicker healing. He won't be able to eat or drink anything thru his mouth as there is no path from his mouth to his stomach. Will take a little getting used to. In about 2 months the Dr's will be able to go back in and connect his stomach to his throat, as I understand it. After a period of time he will be eating and drinking normally, but not after a little bit of practice.
So as I type this, he is in ICU, intibated, and in a severe amount of pain. The nurse even said she has never seen anyone in this much pain. He has 6 teams of doctors looking after him. And they don't always agree on what to do. Confusing and frustrating for his wife. He has a long way to go still, but we are hoping that the worst is over.
On a side note, the infection is so elusive and could not be eradicated because they cannot identify what the bacteria is. When we have a bacterial infection and are given antibiotics, the bacteria is distorted or something. It changes. So in hindsight, the doctor in Hawaii should have cultured my brothers blood to find out what it was. Easy to look back, no judgement here. At all. Just reinforces my thought that we use antibiotics too frivolously.
I cannot express the gratitude I feel to everyone who has sent well wishes, good juju, prayers, or whatever people choose to do. Please keep doing whatever you are doing!! A hard time for my family. So much uncertainty, confusion, and pain.
I hope this helps.
Thanks again
Mary
