Watching the doctors interact about our case has been interesting. they don't know everything or agree on it. they discus, they collect info and they proceed with every possible caution and preventive measure.
We've heard a variety of opinions from the neurosurgeons, the physician's assistant to our neurosurgeon, the intensivist, the hematologist/oncologist, and even the nurses. The nurses just say they don't know to most of our questions, but they try to get us answers. We're in a pretty continuous state of attempting to diagnose. The body is full of mysteries even to the doctors. The clot is in the superior sagittal sinus, but we don't know why or really how.
We first heard of the possibility of the blood clot when Dr. Joseph came in and removed the EVD (drain) on Wednesday of last week, and found out Peter's mood hadn't improved since surgery and that he'd remained irritable. He walked out of the room saying that this concerned him. The amazing thing is that at that moment it occurred to him that there could be a clot in Peter's brain. But in 37 years of practicing neurosurgery, he has never seen this under these circumstances. In fact when has seen it it's been rare, even when the accompanying indication have been present. The last one he saw was a year ago.
I have asked whether it could have simply been due to the swelling. His ventricles were 5x larger than what is normal. The neurosurgeon (of 37 years experience) said no, it's not that, the hematologist (it's her field, but she is quite a bit younger, too) said yes it could be that.
There is question as to whether or not the clot is related to the surgery or is simply a completely coincidental thing with no apparent cause. Blood work is being done at the Mayo Clinic to look for genetic abnormalities. None have been discovered yet. But more tests will be finished over the coming week. Everyone has uniformly said they don't know why this happened. The neurosurgeon on call this wekend said this case is complicated because it's never been seen before. The nerosurgeons all look wide eyed and amazed. They don't know what to tell us because they don't know what has caused this. The hematologist has said she doesn't know why they have never seen it before, because she says they see it all the time. She is from St. Jude's and our nurse suggested that it could be more common as a regional phenomenon. But Dr. Joseph has practiced medicine in a wide variety of locations. TThe hematologist also admitted that they could be simply amazed at the close proxmity of surgery with this clot, and the fact that it's in one so young. The nuerosurgeon on call said he's seen 3 in his 9 years of practice and all in pregnant women. Normally this cold be surgically removed, but since he just had a brain surgery that would be too risky, as would treating it with an injection at the site, because it can cause bleeding, so we're treating wih blood thinner (lovanox) to prevent the spread and further cloggng of the vein as the body does what is neccessary to clear it out, which will take probably at a minimum of 3 to 4 weeks (I assume this means from the point of reachng a therapeutic level of the lovanox which I beieve was reached yesterday).
Other things we're dealing with are vomitting, fever, the strange lump, and not wanting to eat. Yesterday he did want to eat and he ate some spaghetti at dinner time! That was his first food in 3 days. He did vomit a small amount maybe an hour after he ate. But I think that was because of the tylenol i was trying to give him. He has several oral meds which I administer. He had been drinking milk for about 2 days before that. We're putting probiotics into it, which we had a friend bring to us. One is acidophilus and the other is Kefir, and the package doesn't say which strains are in it. But the hospital also administers lactobacillus! We thought that was great. He had massive diahrea like we 've never seen before in all our diapering experience night before last. The neuro people say the fever can be related to the clot, and not to infection. All cultures through 72 hours of both blood and brain fluid have come back negative, but since fever is an indication of infection (according to hematologist and the intensivist) they're keeping him on triple antibiotics anyway. It has yet to be decided if it will be a 7 or a 14 day therapy. The hematologist told us today that they don't know why he has a fever, and that all these symptoms could be something as simple as an ordinary stomache bug which if he'd gotten under any other circumstances would have just been an ordinary sickness dealt with at home. But they don't know what is causing the fever, so they're just doing everything possible to fight anything it could be.
Here is a list of his meds: Orally he gets Decadron- a steroid to reduce any possible swelling tht may be causng the vomitting, his pressures look good though, so this is yet another precaution, he's getting Pepcid and Nexium for acid since he's not eating much, and he's getting tylenol as needed. He's on IV fluids- potassium chloride, he also gets 3 antibiotics: vancomycin, pipercillin, tobramycin. Anti-siezure stuff- Cerebex. As needed zofran, an anti-vomitting thing. He's been off of codiene for 2 days now!
Ok, the thing everyone says when they see him is that he looks good, so they're not to worried, but this is serious. So I asked the hematologist what serious means. She explained that if the clot had progressed it could have caused such swelling that the brain could have swelled down the brain stem and caused death. So I asked if it was still in a serious phase since we've caught it halted progress and are treating. She said no, it's not serious now. So we dodged yet another bullet.
We're now about to go down for a ct-scan to see if there's something they need to know about which has caused the vomitting. we also have seen some wierd eye movements in the past day. They don't expect to find anything, but we'll see.
So pray for us! I'll tell you more later. Ask any questions too, and I'll try to answer. Maybe you'll help us to dig and find out what's going on.
We've heard a variety of opinions from the neurosurgeons, the physician's assistant to our neurosurgeon, the intensivist, the hematologist/oncologist, and even the nurses. The nurses just say they don't know to most of our questions, but they try to get us answers. We're in a pretty continuous state of attempting to diagnose. The body is full of mysteries even to the doctors. The clot is in the superior sagittal sinus, but we don't know why or really how.
We first heard of the possibility of the blood clot when Dr. Joseph came in and removed the EVD (drain) on Wednesday of last week, and found out Peter's mood hadn't improved since surgery and that he'd remained irritable. He walked out of the room saying that this concerned him. The amazing thing is that at that moment it occurred to him that there could be a clot in Peter's brain. But in 37 years of practicing neurosurgery, he has never seen this under these circumstances. In fact when has seen it it's been rare, even when the accompanying indication have been present. The last one he saw was a year ago.
I have asked whether it could have simply been due to the swelling. His ventricles were 5x larger than what is normal. The neurosurgeon (of 37 years experience) said no, it's not that, the hematologist (it's her field, but she is quite a bit younger, too) said yes it could be that.
There is question as to whether or not the clot is related to the surgery or is simply a completely coincidental thing with no apparent cause. Blood work is being done at the Mayo Clinic to look for genetic abnormalities. None have been discovered yet. But more tests will be finished over the coming week. Everyone has uniformly said they don't know why this happened. The neurosurgeon on call this wekend said this case is complicated because it's never been seen before. The nerosurgeons all look wide eyed and amazed. They don't know what to tell us because they don't know what has caused this. The hematologist has said she doesn't know why they have never seen it before, because she says they see it all the time. She is from St. Jude's and our nurse suggested that it could be more common as a regional phenomenon. But Dr. Joseph has practiced medicine in a wide variety of locations. TThe hematologist also admitted that they could be simply amazed at the close proxmity of surgery with this clot, and the fact that it's in one so young. The nuerosurgeon on call said he's seen 3 in his 9 years of practice and all in pregnant women. Normally this cold be surgically removed, but since he just had a brain surgery that would be too risky, as would treating it with an injection at the site, because it can cause bleeding, so we're treating wih blood thinner (lovanox) to prevent the spread and further cloggng of the vein as the body does what is neccessary to clear it out, which will take probably at a minimum of 3 to 4 weeks (I assume this means from the point of reachng a therapeutic level of the lovanox which I beieve was reached yesterday).
Other things we're dealing with are vomitting, fever, the strange lump, and not wanting to eat. Yesterday he did want to eat and he ate some spaghetti at dinner time! That was his first food in 3 days. He did vomit a small amount maybe an hour after he ate. But I think that was because of the tylenol i was trying to give him. He has several oral meds which I administer. He had been drinking milk for about 2 days before that. We're putting probiotics into it, which we had a friend bring to us. One is acidophilus and the other is Kefir, and the package doesn't say which strains are in it. But the hospital also administers lactobacillus! We thought that was great. He had massive diahrea like we 've never seen before in all our diapering experience night before last. The neuro people say the fever can be related to the clot, and not to infection. All cultures through 72 hours of both blood and brain fluid have come back negative, but since fever is an indication of infection (according to hematologist and the intensivist) they're keeping him on triple antibiotics anyway. It has yet to be decided if it will be a 7 or a 14 day therapy. The hematologist told us today that they don't know why he has a fever, and that all these symptoms could be something as simple as an ordinary stomache bug which if he'd gotten under any other circumstances would have just been an ordinary sickness dealt with at home. But they don't know what is causing the fever, so they're just doing everything possible to fight anything it could be.
Here is a list of his meds: Orally he gets Decadron- a steroid to reduce any possible swelling tht may be causng the vomitting, his pressures look good though, so this is yet another precaution, he's getting Pepcid and Nexium for acid since he's not eating much, and he's getting tylenol as needed. He's on IV fluids- potassium chloride, he also gets 3 antibiotics: vancomycin, pipercillin, tobramycin. Anti-siezure stuff- Cerebex. As needed zofran, an anti-vomitting thing. He's been off of codiene for 2 days now!
Ok, the thing everyone says when they see him is that he looks good, so they're not to worried, but this is serious. So I asked the hematologist what serious means. She explained that if the clot had progressed it could have caused such swelling that the brain could have swelled down the brain stem and caused death. So I asked if it was still in a serious phase since we've caught it halted progress and are treating. She said no, it's not serious now. So we dodged yet another bullet.
We're now about to go down for a ct-scan to see if there's something they need to know about which has caused the vomitting. we also have seen some wierd eye movements in the past day. They don't expect to find anything, but we'll see.
So pray for us! I'll tell you more later. Ask any questions too, and I'll try to answer. Maybe you'll help us to dig and find out what's going on.
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