Help Tim Rogers on the road to recovery
Donation protected
Hello I’m Tim’s wife Nikki. Our daughter Kayden and I are asking for your support to help Tim on his medical road to recovery.
Tim was born with a condition called hydrocephalus (water on the brain). As a baby they placed 2 CSF (cerebral spinal fluid) shunts (tubes leading from his head to his abdomen) to drain excess CFS off his brain. The fluid is absorbed by his body in the abdomen. During his life he’s had a few surgeries to maintain these shunts to keep them working properly.
In May 2022 one of Tim’s shunts stopped working. The neurosurgeon tried a new less evasive procedure called a endoscopic third ventriculostomy (ETV) to drain the cerebral spinal fluid. This procedure helps drain the CSF down the center of his spine as the human body intended. Since May Tim has been in and out of the hospital for migraines, neck, shoulder and upper back pain, nausea, vomiting, fainting and dizzy spells.
Monday afternoon 1/2/23. we went to the ER because Tim had been complaining of abdominal pain for a few days and it wasn’t getting any better. They did a CT and found a baseball sized infectious abscess in his abdomen caused from one of his original shunts that had malfunctioned. He underwent emergency surgery to put a drain in for the infection. He was also still complaining of continuous migraines, neck and shoulder pain from the EVT surgery in May. They did another CT which showed the EVT wasn’t working and cerebral spinal fluid was building up on his brain again causing cranial pressure.
Tuesday 1/3/23. The neurosurgeon did a surgery installing an external ventricular drain (EVD) in Tim’s cranium to drain excess fluid. There were complications in recovery. Tim was placed on a ventilator which does his breathing for him and a feeding tube to provide liquid nourishment. They took a culture to test for infection. It’ll run for 10 days to determine if he’s infection free.
Wednesday 1/4/23. The ventilator went from 90% breathing assist to 50% breathing assist, which means Tim was breathing more on his own and showing signs of improvement. He was responding to the nurses with opening his eyes for a second or 2. He even gave a thumbs up when his nurse told him Kayden and I were in the room with him. The doctors are keeping him sedated so he rests and recover. With each sign of improvement they’ll lessen the medication to slowly wake him.
Thursday 1/5/23. Tim had a good night last night. They’re going to try to slowly wean him off the ventilator and clamp off the EVD today. Once the EVD is clamped they will do another CT to check the pressure in his head to see where it’s at. The abscess is no longer putting out infection. They want very little stimulation today as he’s coming off the ventilator because he’s been pretty agitated. He probably just wants that tube out. Only Kayden and I are the only ones allowed to visit for like 5-10 minutes today once he’s off the ventilator. They don’t want too much stimulation. He needs to stay calm and rest. All in all things are looking much better.
Thursday 1/5/23 4pm. Tim is off the ventilator and breathing on his own. They're keeping the BIPAP on him with the pressure turned up a little to make sure he's getting good deep breaths. He's no longer on sedation medication, but they want him to sleep as much as possible to heal. They’re still monitoring the pressure of cerebral spinal fluid on his brain with the external ventricular drain (EVD) in his head. He still has a long way to go and another surgery in the plan to replace his shunt. But…he’s definitely heading in the right direction.
Thursday 1/5/23 6:30pm. I checked in with Tim’s nurse. His cranial pressure is where it should be with him not having a working shut. The EVD draining the cerebral spinal fluid is essentially working as a shunt at this time. He’s still breathing on his own with the CPAP assist. He’s very sleepy but that’s good because he needs to rest. They’re going to test the cerebral spinal fluid from the EVD for infection. They want to make sure the infection is completely out of his body from all aspects before they put in a new shunt. There’s no timeframe as to when that’ll take place as of right now. He’s being a good boy and doing what’s asked of him by the nurses.
Friday 1/6/23 9:30am. I just spoke to Tim’s nurse. Tim is still really sleepy but that’s normal. His body wants to heal. He wants to keep his CPAP mask on. He told the nurse he can breathe better with it and they’re ok with that. His EVD is clamped and they’re testing cranial pressure. They usually leave it clamped for awhile to see how much pressure he has building up. The spinal fluid is clear and looks good. The infection drain is going to be removed as it’s no longer putting out. Not sure when that’ll be. No news on when the shunt replacement surgery will be.
Friday 1/6/23 2:00pm. Tim is awake and knows who Kayden and I are and doing a little bit of talking. When he does talk he's funny as all hell because he's loopy. He's very tired and falls asleep when you're talking to him. He's happy to see us though. They clamped off the EVD and his pressures were high (which they figured would happen with no shunt). They put a sign on his door about 2 visitors and low stimulation.
Saturday 1/6/23 11:00am. Tim had a good night and morning so far. They’ve starting to weaning him off some of the meds. He’s still on antibiotics, but no pain meds. He’s staying awake for longer periods of time. It’s nice to see our Tim again. They took the 2nd culture to test for infection. It’ll run for 14 days to determine if he’s infection free.
Saturday 1/6/23 12:30pm. Tim’s neurosurgeon said things are looking good. He's going to keep Tim on the antibiotics and he's planning on doing the shunt revision (new shunt) surgery once both cultures they’ve taken show no more infection.
Monday 1/9/22 8am. Tim’s neurosurgeon was in to see him this morning. They're not planning on doing the shunt replacement surgery until infectious disease has cleared him. They want to make sure there's no more infection that could cause any problems. He had a good night, but want him to rest and get ready for the upcoming surgery. Low stimulation and sleep is best for the brain to heal. They’re taking things slow since he’s a high risk patient.
Tuesday 1/11/23. Tim’s first culture came back showing infection. They're pumping him full of more antibiotics. The infectious diseases team isn’t messing around. Now we wait to see what the 2nd culture shows. No surgery until he’s clear of all infection. He’ll remain in the ICU with the external cranial drain for the excess spinal fluid until then. In the meantime he’s working with occupational, physical and respiratory therapy.
Monday 1/16/23. Dr. Leschke (Tim’s neurosurgeon) made his rounds. He said the way it looks on the culture Tim’s infection is most likely gone. They will continue the course of antibiotics until his shut replacement surgery on 1/24. He can’t say how long the surgery will take. It all depends on what he finds when he gets in there.
Sunday 1/22/23. Tim’s ICP (inter cranial pressure) was higher. His nurse called me to let me know what was going on. She said this is normal with these drain's because they're only intended to be used short term. The nurses tried to flush his drain line because they believed it had sediment blocking the flow. That didn't work but the on call neurosurgeon gave it a really good flush and everything worked out. It was blocked by brain tissue. His pressures are back to where they should be. Surgery is still on schedule for Tuesday 1/24.
Tim was born with a condition called hydrocephalus (water on the brain). As a baby they placed 2 CSF (cerebral spinal fluid) shunts (tubes leading from his head to his abdomen) to drain excess CFS off his brain. The fluid is absorbed by his body in the abdomen. During his life he’s had a few surgeries to maintain these shunts to keep them working properly.
In May 2022 one of Tim’s shunts stopped working. The neurosurgeon tried a new less evasive procedure called a endoscopic third ventriculostomy (ETV) to drain the cerebral spinal fluid. This procedure helps drain the CSF down the center of his spine as the human body intended. Since May Tim has been in and out of the hospital for migraines, neck, shoulder and upper back pain, nausea, vomiting, fainting and dizzy spells.
Monday afternoon 1/2/23. we went to the ER because Tim had been complaining of abdominal pain for a few days and it wasn’t getting any better. They did a CT and found a baseball sized infectious abscess in his abdomen caused from one of his original shunts that had malfunctioned. He underwent emergency surgery to put a drain in for the infection. He was also still complaining of continuous migraines, neck and shoulder pain from the EVT surgery in May. They did another CT which showed the EVT wasn’t working and cerebral spinal fluid was building up on his brain again causing cranial pressure.
Tuesday 1/3/23. The neurosurgeon did a surgery installing an external ventricular drain (EVD) in Tim’s cranium to drain excess fluid. There were complications in recovery. Tim was placed on a ventilator which does his breathing for him and a feeding tube to provide liquid nourishment. They took a culture to test for infection. It’ll run for 10 days to determine if he’s infection free.
Wednesday 1/4/23. The ventilator went from 90% breathing assist to 50% breathing assist, which means Tim was breathing more on his own and showing signs of improvement. He was responding to the nurses with opening his eyes for a second or 2. He even gave a thumbs up when his nurse told him Kayden and I were in the room with him. The doctors are keeping him sedated so he rests and recover. With each sign of improvement they’ll lessen the medication to slowly wake him.
Thursday 1/5/23. Tim had a good night last night. They’re going to try to slowly wean him off the ventilator and clamp off the EVD today. Once the EVD is clamped they will do another CT to check the pressure in his head to see where it’s at. The abscess is no longer putting out infection. They want very little stimulation today as he’s coming off the ventilator because he’s been pretty agitated. He probably just wants that tube out. Only Kayden and I are the only ones allowed to visit for like 5-10 minutes today once he’s off the ventilator. They don’t want too much stimulation. He needs to stay calm and rest. All in all things are looking much better.
Thursday 1/5/23 4pm. Tim is off the ventilator and breathing on his own. They're keeping the BIPAP on him with the pressure turned up a little to make sure he's getting good deep breaths. He's no longer on sedation medication, but they want him to sleep as much as possible to heal. They’re still monitoring the pressure of cerebral spinal fluid on his brain with the external ventricular drain (EVD) in his head. He still has a long way to go and another surgery in the plan to replace his shunt. But…he’s definitely heading in the right direction.
Thursday 1/5/23 6:30pm. I checked in with Tim’s nurse. His cranial pressure is where it should be with him not having a working shut. The EVD draining the cerebral spinal fluid is essentially working as a shunt at this time. He’s still breathing on his own with the CPAP assist. He’s very sleepy but that’s good because he needs to rest. They’re going to test the cerebral spinal fluid from the EVD for infection. They want to make sure the infection is completely out of his body from all aspects before they put in a new shunt. There’s no timeframe as to when that’ll take place as of right now. He’s being a good boy and doing what’s asked of him by the nurses.
Friday 1/6/23 9:30am. I just spoke to Tim’s nurse. Tim is still really sleepy but that’s normal. His body wants to heal. He wants to keep his CPAP mask on. He told the nurse he can breathe better with it and they’re ok with that. His EVD is clamped and they’re testing cranial pressure. They usually leave it clamped for awhile to see how much pressure he has building up. The spinal fluid is clear and looks good. The infection drain is going to be removed as it’s no longer putting out. Not sure when that’ll be. No news on when the shunt replacement surgery will be.
Friday 1/6/23 2:00pm. Tim is awake and knows who Kayden and I are and doing a little bit of talking. When he does talk he's funny as all hell because he's loopy. He's very tired and falls asleep when you're talking to him. He's happy to see us though. They clamped off the EVD and his pressures were high (which they figured would happen with no shunt). They put a sign on his door about 2 visitors and low stimulation.
Saturday 1/6/23 11:00am. Tim had a good night and morning so far. They’ve starting to weaning him off some of the meds. He’s still on antibiotics, but no pain meds. He’s staying awake for longer periods of time. It’s nice to see our Tim again. They took the 2nd culture to test for infection. It’ll run for 14 days to determine if he’s infection free.
Saturday 1/6/23 12:30pm. Tim’s neurosurgeon said things are looking good. He's going to keep Tim on the antibiotics and he's planning on doing the shunt revision (new shunt) surgery once both cultures they’ve taken show no more infection.
Monday 1/9/22 8am. Tim’s neurosurgeon was in to see him this morning. They're not planning on doing the shunt replacement surgery until infectious disease has cleared him. They want to make sure there's no more infection that could cause any problems. He had a good night, but want him to rest and get ready for the upcoming surgery. Low stimulation and sleep is best for the brain to heal. They’re taking things slow since he’s a high risk patient.
Tuesday 1/11/23. Tim’s first culture came back showing infection. They're pumping him full of more antibiotics. The infectious diseases team isn’t messing around. Now we wait to see what the 2nd culture shows. No surgery until he’s clear of all infection. He’ll remain in the ICU with the external cranial drain for the excess spinal fluid until then. In the meantime he’s working with occupational, physical and respiratory therapy.
Monday 1/16/23. Dr. Leschke (Tim’s neurosurgeon) made his rounds. He said the way it looks on the culture Tim’s infection is most likely gone. They will continue the course of antibiotics until his shut replacement surgery on 1/24. He can’t say how long the surgery will take. It all depends on what he finds when he gets in there.
Sunday 1/22/23. Tim’s ICP (inter cranial pressure) was higher. His nurse called me to let me know what was going on. She said this is normal with these drain's because they're only intended to be used short term. The nurses tried to flush his drain line because they believed it had sediment blocking the flow. That didn't work but the on call neurosurgeon gave it a really good flush and everything worked out. It was blocked by brain tissue. His pressures are back to where they should be. Surgery is still on schedule for Tuesday 1/24.
Co-organizers (2)
Nikki Rogers
Organizer
Lincoln, WI
Kayden Rogers
Co-organizer