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6/22/2017 Latest post:
May 3rd Tim had his left knee replaced at Woodwinds in Woodbury MN. His initial recovery went well. At one point Tim had let one of the dogs lick a spot on his incision that hadn't completely healed.
June 3rd, he woke up with a fever and his knee was swollen and red. Tracy took him down to see his surgeon who prescribed him antibiotics.
June 9th, his knee was still infected. He went to the Spooner ER and it was determined that his surgeon wanted him back down at Woodwinds for surgery. Tim drove down and checked himself into Woodwinds Friday evening. Saturday June 10th, his surgeon went in and cleaned as much of the infection out as he could. Tim was to be sent home with a pic line in for antibiotics to be administered for 6 weeks.
After surgery recovery was going well. Saturday he was feeling well, Sunday he was feeling well, Monday he was feeling well and they considered letting him go home but were contemplating the possibility of moving him to transitional care Tuesday due to the complex situation with the pic line and his mobility.
Tuesday June 13th Tim woke up and was unable to see clearly. His vision was blurry, he could make out shapes but he was unable to identify specifics. The Dr's had initially had him on Gabapentin as part of his med cycle. One of the side effects of that are vision issues. They discontinued that, however it didn't clear up. By Tuesday afternoon Tim's speach was significantly slurred. He was telling the nurses that "this is how I always talk". The nurse believed him and had to be corrected by family that this clearly is NOT normal.
Wednesday June 14th Tim was no longer able to communicate with us. His eyes were rolled back in his head, his mouth was open and slack, he was moaning/groaning loudly, his arms were pulled up tight to his shoulders and he was extremely agitated. He would throw his arms around, hitting his bed rails uncontrollably. At this point we were told that he was suffering from withdrawals from prescription medication and that he was in a state of Delirium. We expressed to the Dr's that we wanted him moved. We were not confident in the care he was receiving in the ICU at Woodwinds. The Dr's changed up some of his meds to try and see if they could calm him. He was given a CT scan and the results were normal. This continued through all of Wednesday. We were continually assured that he was going through withdrawal and that it was going to take a few days. We argued this with the Dr's, it didn't make any sense. He had been on antibiotics and pain meds administered by the hospital since Friday evening.
Thursday June 15th he was calmer and his arms were relaxed at his side. No changes in his facial muscles. He was able to follow just a few commands, wiggle his foot, slight hand squeeze, raise two fingers. Thursday afternoon his breathing was labored. We were concerned about him getting pneumonia. He was gurgling when trying to breath. The nurses had been suctioning out his mouth but it was further inside. They did a chest X-Ray around 2pm and that came back clear. Around 5pm they used a tube through his nose to clear out a LOT of mucus. After that his breathing was little better and he seemed to calm even more. At 8:20pm he coded - respiratory failure due to Flash Pulmonary Edema. He was intubated and sedated.
Friday June 16th he remained under sedation, the Dr's wanted to give him time to rest and for his body to heal. They did an MRI - normal. They did an EEG - normal (consistent with someone under sedation). We were still requesting an approval to move hospitals. The issue was with insurance. The Dr's have to indicate that it is medically necessary and that he would need a higher level of care. They did not feel that he needed more care than they were providing.
Saturday June 17th morning the did a CAT scan to see if any of the infection had gone up into his brain. When he came back from that we waited another hour and then he was taken off of all sedation medication. It was explained to us that normally people come out of the type of sedation he had been administered within 2-10 minutes. We were anticipating him waking up at any moment, praying for him to be our regular Tim. After two hours of waiting and trying diligently to wake him we were told that they have seen it take up to 24 hours. 24 hours later we were told they have seen it take up to 7 days.
Sunday June 18th they did a second MRI to make sure they didn't miss anything the first time. We were told it could be a few more days, the staff didn't seem concerned. Tim was no longer reacting to commands. It seemed that we could get him to wiggle his toes but we were told that was just reflexes and that it didn't mean anything unless he was able to do it three times in a row at request.
Monday June 19th, no change in Tim. Tracy requested a care conference with all of his Dr's, which was set up for Tuesday morning. She also requested a second EEG so we could have all current information on Tim in the conference.
Tuesday June 20th in the care conference the Dr's finally admitted they didn't know what was wrong with Tim. At this time they had stopped administering all meds to lower his heart rate and blood pressure. Being on the meds for 6 days they were unable to get those two to acceptable levels. The only thing he was on was one antibiotic and saline. The EEG results were not as we had hoped. They told us he had little brain stem activity and minimal brain function. We were devastated and elated at the same time. We were finally being granted approval to move him to the Mayo Clinic in Rochester. He was transferred by ambulance Tuesday evening.
The treatment he received from the moment he arrived was phenomenal! It was a huge relief to the family to FINALLY have him somewhere they would figure out what was wrong and how to fix it. WITHIN 24 HOURS... they had a preliminary explanation. This morning it was confirmed that Tim is suffering from Guillain-Barre Syndrome.
"Guillain-Barre (gee-YAH-buh-RAY) syndrome is a rare disorder in which your body's immune system attacks your nerves. Weakness and tingling in your extremities are usually the first symptoms. These sensations can quickly spread, eventually paralyzing your whole body. In its most severe form Guillain-Barre syndrome is a medical emergency. Most people with the condition must be hospitalized to receive treatment. The exact cause of Guillain-Barre syndrome is unknown. But it is often preceded by an infectious illness such as a respiratory infection or the stomach flu. There's no known cure for Guillain-Barre syndrome, but several treatments can ease symptoms and reduce the duration of the illness. Most people recover from Guillain-Barre syndrome, though some may experience lingering effects from it, such as weakness, numbness or fatigue."
Tim has a VERY long road ahead of him, but for now we are elated that he is going to live! The plan is to treat with IVIG to help stop the bad antibodies from attacking his nerves and time... just time. He will slowly (or quickly) regain his motor skills.
We will be posting updates on his care and progress here. Please keep him in your prayers for a quick full recovery!!