10/15: Hospital Days 13, 14, and 15
In the afternoon of Friday, October 13 (Happy Birthday to my big brother Boris), I spoke to Dr. Goldman, the hemoc at Children's, who originally diagnosed Leo. Dr. Goodell, and his partner Dr. Kwon, both hemocs at Lutheran General, where Leo has now been for 15 days, have refused to even stop by to consult with us about Leo's condition. Dr. Goldman, though, agreed to oversee Leo and said he understood that we're trying to do everything possible. Even though he may not fully agree with, understand, or trust antineoplastons, at least Dr. Goldman seems willing to help. He said to get the ball rolling with another MRI as soon as possible.
That same Friday, things got worse for Leo. At this point, Leo's entire digestive tract had been cleaned out and his NG tube feeds were started very slowly: 10mL -- that's less than a tablespoon -- of 50% diluted formula per hour. He started having waves of pain, during which he moaned and grunted and clenched his fists so hard that his little hands almost started to bleed. For this, he got two rolls of gauze to squeeze so as not to hurt himself. None of us could even imagine the pain he was feeling, but just listening to it hour after hour was torture. These waves lasted several minutes and then went away for an hour or two, but always came back. If they caught it in time, Leo would get Tylenol, or sometimes Ativan if it got worse. Saturday morning, at exactly 4am, the wavelength decreased to every few minutes. So for 5-10 minutes he tensed and clenched and his heart rate jump to over 150 beats per minute, and for a few minutes not. This is how Leo's weekend started.
Saturday morning we found out that an MRI had been scheduled for 2pm, so Leo's miniscule feedings would have to be discontinued at 10am, since he would need to be sedated. The lack of even this tiniest bit of food seemed to make his waves of pain worse. We also found out that a pain management specialist would come at about 4pm and we were looking forward to this. Then a few doctors came.
Dr. Garcia, who is one of the attendings (and I think director) of the Pediatric Intensive Care Unit, came since Leo in a half-way house between ICU and the "regular" floor. We were very concerned about Leo's pain and asked for something to help him. He said he had consulted with Dr. Berman, a GI attending, who said that Leo shouldn't have anything much stronger or containing narcotics, barbituates, or ibuprofen-like medicines since they can cause more constipation, gas, and GI bleeding -- all the side-effects we're trying to avoid. Tylenol and Ativan were about it, but both weren't very effective and could only be given at 4 and 6 hour intervals, respectively. He said he would return later or tomorrow.
Twenty minutes after the MRI was supposed to have started, at 2:20pm, nurse Kathy came in telling us that the anesthesiologist said that now Leo had to be 6 hours without food, not 4. Why? Don't know because he hung-up on her as she was asking. We had no choice since it's Saturday and he's the only pediatric anesthesiologist available.
At 2:50pm, while Leo should have been in the MRI, Dr. Hernandez came. He's the GI attending that saw Leo on the first day of hospitalization, October 1. We discussed the waves of pain and he said that a stronger medicine can and should be given. But if something sometimes causes constipation, then to give a mild laxative or stool softener to prevent it. This made sense, but he couldn't really make a recommendation until the pain management guy came at 4pm. He promised to return tomorrow at about 10 or 11am.
4pm came and went. No MRI and no pain management. Even transport came for the MRI and just as we were going to move Leo, someone called and said that something more important came-up than a starving 3 year-old with a brain tumor and intolerable pain.
At about 5:30pm, Dr. Yuri Aranov, who had given Leo anesthesia at the last MRI on September 26 came. Turns out the anesthesiologists are also the pain people. Makes sense. He told it the way he saw it. This included Leo possibly not being in pain, that these waves may be caused by psychosis brought-on by decadron. Or maybe Leo really was in pain. But the sole antispasmodic medicine tried the night before didn't help, so he must not be having spasms of the GI tract. The bottom line was that Leo may be in pain or may not be in pain. Since Leo couldn't tell us exactly what was going on, we shouldn't just trust what we think we see and hear. But they were still going to try to find a medicine to help that wouldn't constipate Leo (more), wouldn't cause (more) gas, and wouldn't cause (more) GI bleeding. Dr. Aranov was with us for a while and went to consult with Dr. Hernandez before returning and telling us he would continue researching.
I don't remember the exact time Leo was finally taken to the MRI, but I think it was at about 7:30pm. So he was starved for about 9.5 hours and no one knew why, other than probably more important patients, obviously. Anyway, I went with Leo to the bowels of the hospital and wound-up in a trailer that now holds Lutheran General's inpatient MRI equipment. At about 8pm, while Leo was stretched-out on a table besides the tube of the MRI machine, I started asking why it looked as if it wasn't even going to happen. The following floored me and I seriously considered taking Leo back to his room.
There were 2 guys running the MRI equipment with a pump for medicine (anesthesia). There was 1 anesthesiologist with a ginormous syringe filled with white anesthesia. There was 1 nurse that came with us just to oversee Leo. What was missing? Someone (a special nurse) who knew how to program the pump to deliver the anesthesia! Would I have been wrong to lose my cool at this point!? Probably not, but I realized it would accomplish nothing. So after playing with the pump, the anesthesiologist seemed to figure-out how it worked, while my blood pressure nearly popped-off my head wondering if he was about to administer a lethal dose, which he assured me he wouldn't. Leo's MRI started at about 9pm and ended at about 9:30, while I watched fuzzy images appear on the operator's monitor. Leo was returned to his room asleep (he did wake-up eventually). Shortly after, the diluted formula started again at 10mL per hour.
At exactly midnight the room phone rang. It was Dr. Kroin telling Marina the results of the "wet read" of the MRI. There were no measurements. There was no comparison to the previous MRI just 3 weeks ago. At midnight, she told Marina that Leo had hydrocephalus. Marina flat-out didn't believe her, but I was in pieces...
Sunday morning started with the usual resident's visit. Poor guy didn't know what he was getting himself into, so I warned him. I'll spare the details, but he ran out of the room and searched for a neurosurgeon. He found one to look at yesterday's MRI and the one from September 26. He told this third-year resident to relay to us that Leo does not have hydrocephalus and that there seemed to be no changes from the previous scan. Eventually Dr. Rabin, a radiologist we've never met but the one that does all of Leo's MRI readings for consistency, basically said the same thing. The measurements were different (probably because different equipment was used), but these are secondary now. The most important point is that he agreed Leo didn't have hydrocephalus. Thank G-d!
This turned-out to be a very good resident, but unfortunately I didn't catch his name. He was good because he found a neursurgeon to compare MRIs on Sunday morning, stayed to listen to us (mostly bitch and complain about how Leo's current condition was caused because of his peers' negligence), and made us believe he cared. So on to these waves of pain. He said at this point the only option was to actually feed Leo. We wondered if that was taught in a class in medical school, but decided not to be outwardly sarcastic to him since he seemed to be trying to help. Long story short, Leo's feedings would be slowly increased, every 2 hours, until they reached 60mL per hour. If there weren't any issues with more pain, throwing-up, etc., the dilution would then be reduced until Leo was being fed only formula.
The waves of pain didn't completely go away. Sometimes they weren't as frequent. Sometimes they didn't seem to be as intense. Maybe it was the food. Maybe it was the Tylenol and/or Ativan. Maybe it was all 3. We don't know and none of the doctors knew, but Leo seemed ever so slightly better today than the previous few days.
Dr. Garcia came and talked to us for a while. There was a thought maybe Leo had colitis. It was simple to diagnose (lab work) and easy to treat. Dr. Hernandez came a few minutes later. I half-jokingly reminded him that he had promised to come between 10 and 11, not 12:30, and he just smiled. Regardless, he said Leo shouldn't have colitis because there would be fresh, red blood in his poop, but there was none. The treatment: food. He agreed with regimen we told him from the resident, said he'd come back tomorrow, felt Leo's belly and said it was soft (the way every single nurse, resident, and attending had done), and left.
Eventually Leo did reach 60mL per hour and did seem just a tad more comfortable.
This weekend was nearly impossible for everyone, especially Leo. The Grandmothers were like fountains at Leo's bedside, impotently trying to make him comfortable and helplessly watching and hearing his suffering. The Grandfathers couldn't even watch for the most part. Anna and Nina can only see one of us at a time because the other is always at the hospital with Leo. Marina and I are at wit's end with the "care" Leo has gotten, nevermind the physical and psychological exhaustion of having to fight every step of the way. But since Leo can't fight for himself yet, we have to do it for his sake. Leo's care has been a lot better since the ICU visit, but the fact that he wound-up in the ICU while being watched by countless nurses, residents, and attendings is inexcusable. The nurses seem much better in this step-down ICU and the attendings stay a little longer when talking to us and listen to us as well. But Leo remains in pain and is somewhat unresponsive, although conscious -- all brought-on by this hospitalization. At this point, though, we just want to take him home and slowly restart treatment. We know the ultimate root cause of all this and our goal remains the same. We just need to figure-out how to avoid all the landmines.
That same Friday, things got worse for Leo. At this point, Leo's entire digestive tract had been cleaned out and his NG tube feeds were started very slowly: 10mL -- that's less than a tablespoon -- of 50% diluted formula per hour. He started having waves of pain, during which he moaned and grunted and clenched his fists so hard that his little hands almost started to bleed. For this, he got two rolls of gauze to squeeze so as not to hurt himself. None of us could even imagine the pain he was feeling, but just listening to it hour after hour was torture. These waves lasted several minutes and then went away for an hour or two, but always came back. If they caught it in time, Leo would get Tylenol, or sometimes Ativan if it got worse. Saturday morning, at exactly 4am, the wavelength decreased to every few minutes. So for 5-10 minutes he tensed and clenched and his heart rate jump to over 150 beats per minute, and for a few minutes not. This is how Leo's weekend started.
Saturday morning we found out that an MRI had been scheduled for 2pm, so Leo's miniscule feedings would have to be discontinued at 10am, since he would need to be sedated. The lack of even this tiniest bit of food seemed to make his waves of pain worse. We also found out that a pain management specialist would come at about 4pm and we were looking forward to this. Then a few doctors came.
Dr. Garcia, who is one of the attendings (and I think director) of the Pediatric Intensive Care Unit, came since Leo in a half-way house between ICU and the "regular" floor. We were very concerned about Leo's pain and asked for something to help him. He said he had consulted with Dr. Berman, a GI attending, who said that Leo shouldn't have anything much stronger or containing narcotics, barbituates, or ibuprofen-like medicines since they can cause more constipation, gas, and GI bleeding -- all the side-effects we're trying to avoid. Tylenol and Ativan were about it, but both weren't very effective and could only be given at 4 and 6 hour intervals, respectively. He said he would return later or tomorrow.
Twenty minutes after the MRI was supposed to have started, at 2:20pm, nurse Kathy came in telling us that the anesthesiologist said that now Leo had to be 6 hours without food, not 4. Why? Don't know because he hung-up on her as she was asking. We had no choice since it's Saturday and he's the only pediatric anesthesiologist available.
At 2:50pm, while Leo should have been in the MRI, Dr. Hernandez came. He's the GI attending that saw Leo on the first day of hospitalization, October 1. We discussed the waves of pain and he said that a stronger medicine can and should be given. But if something sometimes causes constipation, then to give a mild laxative or stool softener to prevent it. This made sense, but he couldn't really make a recommendation until the pain management guy came at 4pm. He promised to return tomorrow at about 10 or 11am.
4pm came and went. No MRI and no pain management. Even transport came for the MRI and just as we were going to move Leo, someone called and said that something more important came-up than a starving 3 year-old with a brain tumor and intolerable pain.
At about 5:30pm, Dr. Yuri Aranov, who had given Leo anesthesia at the last MRI on September 26 came. Turns out the anesthesiologists are also the pain people. Makes sense. He told it the way he saw it. This included Leo possibly not being in pain, that these waves may be caused by psychosis brought-on by decadron. Or maybe Leo really was in pain. But the sole antispasmodic medicine tried the night before didn't help, so he must not be having spasms of the GI tract. The bottom line was that Leo may be in pain or may not be in pain. Since Leo couldn't tell us exactly what was going on, we shouldn't just trust what we think we see and hear. But they were still going to try to find a medicine to help that wouldn't constipate Leo (more), wouldn't cause (more) gas, and wouldn't cause (more) GI bleeding. Dr. Aranov was with us for a while and went to consult with Dr. Hernandez before returning and telling us he would continue researching.
I don't remember the exact time Leo was finally taken to the MRI, but I think it was at about 7:30pm. So he was starved for about 9.5 hours and no one knew why, other than probably more important patients, obviously. Anyway, I went with Leo to the bowels of the hospital and wound-up in a trailer that now holds Lutheran General's inpatient MRI equipment. At about 8pm, while Leo was stretched-out on a table besides the tube of the MRI machine, I started asking why it looked as if it wasn't even going to happen. The following floored me and I seriously considered taking Leo back to his room.
There were 2 guys running the MRI equipment with a pump for medicine (anesthesia). There was 1 anesthesiologist with a ginormous syringe filled with white anesthesia. There was 1 nurse that came with us just to oversee Leo. What was missing? Someone (a special nurse) who knew how to program the pump to deliver the anesthesia! Would I have been wrong to lose my cool at this point!? Probably not, but I realized it would accomplish nothing. So after playing with the pump, the anesthesiologist seemed to figure-out how it worked, while my blood pressure nearly popped-off my head wondering if he was about to administer a lethal dose, which he assured me he wouldn't. Leo's MRI started at about 9pm and ended at about 9:30, while I watched fuzzy images appear on the operator's monitor. Leo was returned to his room asleep (he did wake-up eventually). Shortly after, the diluted formula started again at 10mL per hour.
At exactly midnight the room phone rang. It was Dr. Kroin telling Marina the results of the "wet read" of the MRI. There were no measurements. There was no comparison to the previous MRI just 3 weeks ago. At midnight, she told Marina that Leo had hydrocephalus. Marina flat-out didn't believe her, but I was in pieces...
Sunday morning started with the usual resident's visit. Poor guy didn't know what he was getting himself into, so I warned him. I'll spare the details, but he ran out of the room and searched for a neurosurgeon. He found one to look at yesterday's MRI and the one from September 26. He told this third-year resident to relay to us that Leo does not have hydrocephalus and that there seemed to be no changes from the previous scan. Eventually Dr. Rabin, a radiologist we've never met but the one that does all of Leo's MRI readings for consistency, basically said the same thing. The measurements were different (probably because different equipment was used), but these are secondary now. The most important point is that he agreed Leo didn't have hydrocephalus. Thank G-d!
This turned-out to be a very good resident, but unfortunately I didn't catch his name. He was good because he found a neursurgeon to compare MRIs on Sunday morning, stayed to listen to us (mostly bitch and complain about how Leo's current condition was caused because of his peers' negligence), and made us believe he cared. So on to these waves of pain. He said at this point the only option was to actually feed Leo. We wondered if that was taught in a class in medical school, but decided not to be outwardly sarcastic to him since he seemed to be trying to help. Long story short, Leo's feedings would be slowly increased, every 2 hours, until they reached 60mL per hour. If there weren't any issues with more pain, throwing-up, etc., the dilution would then be reduced until Leo was being fed only formula.
The waves of pain didn't completely go away. Sometimes they weren't as frequent. Sometimes they didn't seem to be as intense. Maybe it was the food. Maybe it was the Tylenol and/or Ativan. Maybe it was all 3. We don't know and none of the doctors knew, but Leo seemed ever so slightly better today than the previous few days.
Dr. Garcia came and talked to us for a while. There was a thought maybe Leo had colitis. It was simple to diagnose (lab work) and easy to treat. Dr. Hernandez came a few minutes later. I half-jokingly reminded him that he had promised to come between 10 and 11, not 12:30, and he just smiled. Regardless, he said Leo shouldn't have colitis because there would be fresh, red blood in his poop, but there was none. The treatment: food. He agreed with regimen we told him from the resident, said he'd come back tomorrow, felt Leo's belly and said it was soft (the way every single nurse, resident, and attending had done), and left.
Eventually Leo did reach 60mL per hour and did seem just a tad more comfortable.
This weekend was nearly impossible for everyone, especially Leo. The Grandmothers were like fountains at Leo's bedside, impotently trying to make him comfortable and helplessly watching and hearing his suffering. The Grandfathers couldn't even watch for the most part. Anna and Nina can only see one of us at a time because the other is always at the hospital with Leo. Marina and I are at wit's end with the "care" Leo has gotten, nevermind the physical and psychological exhaustion of having to fight every step of the way. But since Leo can't fight for himself yet, we have to do it for his sake. Leo's care has been a lot better since the ICU visit, but the fact that he wound-up in the ICU while being watched by countless nurses, residents, and attendings is inexcusable. The nurses seem much better in this step-down ICU and the attendings stay a little longer when talking to us and listen to us as well. But Leo remains in pain and is somewhat unresponsive, although conscious -- all brought-on by this hospitalization. At this point, though, we just want to take him home and slowly restart treatment. We know the ultimate root cause of all this and our goal remains the same. We just need to figure-out how to avoid all the landmines.
posted by Yury at 7:54 PM
1 Comments:
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