Tony had his first big bump in the road to recovery June 20-30. It started June 20th with fever, chills, sweats, low blood pressure, and really bad knee pain going down to his ankle. Below is the updates from his family care team during that rough week.
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June 20: Tony’s first bump along his road to recovery had us doing a bunch of phone calls and a quick drive to Portland to see his CF doctor who is in contact with the Boston team.
He woke up this morning with a fever, chills, sweats, nausea and a few other flu like symptoms. He also had some pretty severe knee pain and now has some shoulder pain going on. His blood pressure has been low all day, and his heart rate has been elevated. When they did a text x-ray, they found fluid in his chest cavity and will be doing a aspirate of the fluid for a culture is at maine medical center. He is in the ER while they are working on the details to transport him to Boston by ambulance.
June 21: Tony has been resting most of the day. He is still getting feverish without Tylenol. They have done blood cultures to see what might be growing. He had a chest CT to see if they have access to where that fluid is to get a sample of it to test. Right now it’s a waiting game for results to come back. They’ve had him hooked up to fluids all day and that has been keeping his blood pressure better. Part of the wait is because he’s on a blood thinner and they don’t want to cause more complications until that level is at an acceptable rate. Hopefully we’ll have more answers tomorrow and a treatment plan is started. For you medical people out there, he has a pleural effusion that wasn’t present on Friday’s x-ray but was obvious on yesterday’s x-ray.
June 25: It has been a long week for Tony with his surprise visit back to Boston hospital. He is doing much better today. His fever broke on Friday, and he didn’t need oxygen last night. He is a lot weaker. His breathing is still hard. They are hoping that when the chest tube comes out, it will get easier. No news on when that will be, but they are not getting much fluid out through the tube now. His blood pressure is so much better, too. It is staying is the normal range. I hear he also has his sassy pants back on.
June 26: The big question of what happened to cause this episode put as simply as I can explain it. Tony’s body got a bit confused. When he got the infection in lungs, his body’s immune system went haywire. Due to the transplant surgery and the immunotherapy drugs his immune system attacked the weakest areas in body. His knees have had issues for years, so that caused the knee pain. His lungs didn’t know what to do so they started producing fluid into the chest cavity whiched caused the pleural effusion to happen. The last couple days Tony has made some big improvements. He hasn’t needed oxygen at night and his blood pressure, temperature and oxygen level have returned to normal. Today they started the process to see they can remove the chest tube. There’s a possibility that it will be removed tomorrow. When it is removed, then the discussion of discharge to finish the course of antibiotics will be done. Hopefully will be home soon!
June 28: This has been an exciting couple days! They removed the chest tube yesterday and hes doing so much better! There was some confusion this morning because they were supposed to be discharging him on oral antibiotics but his insurance won’t pay for this antibiotic. So they were going to keep him another day or two and put a midline in for IV antibiotics to do at home…… We weren’t very good with that answer so explored options on our own. Thanks to GoodRx, we will be going home today! The oral antibiotic will be a reasonable price after GoodRx discount and it will be SO worth every penny to have him home! Waiting on the discharge papers now and we’ll be hitting the road!