Thank you for visiting Brian's Caring Bridge site. This site will be edited by either myself (Heather), Tracey or Sheila. I will try to summarize everything here and then we will be providing daily updates in the journal section. My dad has a history of Rheumatoid Arthritis and has been treated with Remacaid for the last 10+ years. He also has red spots on his body which started 3-4 months ago. They have been in the upper leg and feet/ankle area as well as they moved to the abdomen area while he has been in the hospital. (The RA and the spots become more relevant below once we finally receive his diagnosis.)
About 4 weeks ago he was golfing with some friends and fainted three times. The reason for the fainting was due to his high blood pressure medication as he lost some weight and they believe the medication was too much for him. But as a result of this fainting, a doctor ordered a CT scan where they saw some "spots" on his lungs.
Fast forward to Friday, August 25th which is when his doctors decided to do a PET Scan as they were suspecting Lymphoma. This PET Scan was completed Friday morning, so now we start the waiting game.
Saturday, August 26th Tracey and I threw an early 50th Wedding Anniversary for my mom and dad. This turned out to be perfect timing given the road we have ahead of us. Dad wasn't feeling the best, but he was a trooper through all of the festivities, socializing and laughing with our family.
Monday, August 28th. This is the evening that he went into the ER at Mercy hospital and has been here ever since. The reason for going into the ER was because he was coughing up blood, he was extremely exhausted and his left lung/back area was very painful. Wednesday night, August 30th is the night they moved him to ICU as he wasn't getting any better.
When I walked into the ICU on Thursday morning I was overwhelmed by so many things, one of them being the amount of doctors and nurses that were caring for my dad. From 8:00AM-10:00AM, I saw an Oncologist, Internal Medicine, Pulmonary, Renal, Intensivist (the doctor that runs the ICU), etc. It was a revolving door of doctors and nurses asking a ton of questions as they were all trying to figure out what was going on with my dad. It seemed to be a puzzle to them all. At this point we were still waiting for test results from the PET Scan, blood work, etc.
Thursday around noon they put him on a respirator and partially sedated him for this. At this point he was getting worse by the hour with all of his stats declining including blood pressure, lung function, kidney function, etc. While on the sedation they did a biopsy of a skin lesion and a BAL biopsy down his breathing tube. So more waiting for our family to get theses results back... also knowing we were approaching a long weekend due to Labor Day Weekend there was a chance that we would not get results until Tuesday.
Thursday night Dr Baker came to our family and told us that he has a high mortality rate and that he is declining quickly. We were all devastated and couldn't understand what was happening and why it was happening so fast.
Friday morning, Tracey and I were at the hospital while Dr Baker came in first thing in the morning. This was when he told us that our dad was slowly dying. Remember, we were still waiting for test results at this time so they were still trying to determine what they were treating. Dr Baker decided to start my dad on a high dose of Solu-Medrol, which is a very high dose of a steroid. At 11:00 AM on Friday our family had a meeting with Dr Baker to discuss where we are at and where we are headed, knowing what we know. In this meeting Dr Baker stated that we are looking at either Lymphoma or Vasculitis (there was a 3rd option, but I forget what that was). If the results come back as Lymphoma, he quite frankly is too sick to be treated with ChemoTherapy. If the results come back as Vasculitis, this is now being treated with the Solu-Medrol steroid which was started earlier in the morning. We discussed our options and decided to approve a DNR for my dad. This was hard for our family, but something we needed to do at that point. We all knew that we had to get him through the weekend. We knew that the next 24-48 hours would be key to his survival. At this point, we had to hope that he would begin to respond to the treatments he was being given and have a positive reaction to the Solu-Medrol.
Friday afternoon at 4:00PM, Dr Baker came to us with preliminary test results. The skin biopsy came back as negative for Lymphoma but positive for Vasculitis. The BLA biopsy from the breathing tube came back as negative for Lymphoma. At this point we knew what he was fighting. He is fighting a very serious case of Vasculitis and the Solu-Medrol should help with this (assuming it wasn't started too late). Now we started to get some answers.... we just needed him to respond positively to the treatments. Vasculitis is defined as an inflammation of the blood vessels. Feel free to google for more information on this and its relevancy to Rheumatoid Arthritis and the red spots I mentioned above. The rest of the Labor Day Weekend was spent at the hospital with my dad, our family, our extended family and lots of friends. On Sunday morning, Dr Baker came to us and told us that he was finally starting to level off, meaning he was responding to treatments and not declining. We were so happy to hear this!
On Monday, there was a decline in the function of his kidneys, so it was decided to start dialysis and plasmapheresis. The dialysis will be completed everyday and the plasmapheresis will be completed every other day. For more information on these, please google them as this journal is getting long.
On Thursday, my mom had a very good conversation with Dr Baker and he told my mom that he actually thought my dad could pull through and beat this! What great news after all of this! Obviously its a long read ahead, but at least we are headed in the right direction. The doctors will work through the weekend to remove him from sedation and pain meds, ultimately leading to removal of the breathing tube. They attempted to remove some sedation medication on Thursday afternoon (mom and Tracey were there for this). He responded to voice commands and partially opened his eyes. Although with that came a fluctuation in his blood pressure and he seemed very agitated.
On Friday, they performed dialysis and plasmapheresis again. This along with other poking and prodding they decided to not attempt to remove him from sedation at all on Friday. Since he was not a fan of this on Thursday they decided to let his body relax the rest of the day.
This brings us to Saturday morning (9/9/17).... As we have updates, we will be posting in the journal here.
Our family would like to thank Mercy Hospital and Mercy ICU. The doctors, nurses, nursing assistants, respiratory therapists, etc have all been wonderful! Dr Baker was with us for over a week while he was on duty and he was wonderful. We are now in the hands of Dr Tomlin and know he will do a wonderful job caring for my dad.
Thank you to all of our friends and family who have reached out via phone call, text message, email, etc. We have had countless visitors, which has been very nice.
If you plan to visit in the future, please coordinate this visit with either myself, Tracey or my mom. We are trying to be at the hospital as much as possible, but we also need our rest and sleep. Also, when they are doing dialysis we may not be able to be in the room. If you coordinate a visit with one of us, we will make sure my dad is up to visitors and that we are there to be with you.
He is in the ICU at Mercy, so please refrain from sending flowers. As much as we appreciate the gesture, the room is not large enough and they need a lot of room for the dialysis machine.
The thoughts and countless prayers have obviously been working! Please pray that my dad continues to recover. Please pray that my mom continues to get rest and takes care of herself.