Back in the Hospital

[Guest guest]

was admitted last weekend on Saturday night because he'd been running a fever all day, in spite of having been on an IV antibiotic for 2 weeks at home. They started him on Vancomycin and Ceftaz Saturday night, along with doing chest x-rays, then added in Clindamycin and did abdominal x-rays & ultrasound Sunday. Monday he had an MRCP, because Dr. Khan thought he might be developing new strictures in his bile ducts since he's had his stents out since December. All we found was that his ducts inside and outside his liver are dilated, which is not changed from earlier imaging studies. By Tuesday he was still febrile (running fevers), so the Ceftaz was switched out for Imipenem. At this time we've got 3 hard hitting, wide coverage IV antibiotics on board. And he's still running fevers. Wednesday comes along and now he has a chest/abdominal/pelvis CT scan. THIS time we come up with all kinds of stuff, including right side pleural effusion (fluid between the membranes surround his lung), possible esophagitis (inflammation of the esophagus), possible hiatal hernia (stomach muscle bulging up through the diaphram), ascites (fluid in the abdominal cavity), dilation of the bile ducts (we already knew that), enlarged lymph nodes in and around his right lung (indicating infection, which is the likely reason for the fluid) and to consider the option of a fungal infection. The only positive finding was that the colitis (inflammation of the colon) that he's had on the right side looked improved from his CT in February. Wednesday night he ends up needing to be put on oxygen again because his levels were dropping. Heart rate is increasing. Thursday they put him on Amphotericin

B - a NASTY anti-fungal medication with horrible side effects. (A former resident of 's who is now Peds Behavioral doc said they usually called "Ampho-terrible" because it's so nasty.) They also scheduled him to go to Interventional Radiology on Friday to have the fluid drawn off from around his lung. (IR is where they do things inside the body with the help of x-ray, ultrasound, CT scan, etc, to see where they need to go.) HOWEVER, his platelets and other blood counts had been slowly dropping through the week, and his platelet level was now too low for them to do the procedure with out giving him more platelets first. Otherwise, he wouldn't be able to clot after the procedure and would just keep bleeding. (Normal range for platelets is 150 - 350. was down to 25 by Thursday.) So between Thursday night and Friday afternoon they gave him 3 or 4 packs of platelets to get him to a level where they were comfortable, then

had to transfuse him, also, because of his other blood count levels being so low. Thursday night or Friday morning he also spiked his temp up over 103 and lay in bed shivering almost uncontrollably. By this point, I was really starting to get scared. Friday afternoon we go down to IR to have the procedure done for the effusion. They ended up pulling off 150 cc's of fluid from around his lung. (Putting it in perspective, that's close to have a soda can worth.) One would have expected his breathing and oxygen levels to improve. They, instead, got much worse. He went from 1 liter of oxygen to 5, his heart rate was in the 150's, and I'd never seen him work that hard to breathe, even with pneumonia as a baby or with two collapsed lungs at one time. So far, his LFT's are all looking okay enough. Biliruben has been holding pretty steady at 1.7 all week (high end of normal is 1.3). ALT is

normal. AST is in the 70's. (range on both of those is 0-50). ALP is in the 200's, right in the middle of range. GGT is 414, quite a ways above range, but not nearly the worst he's been there. And a new one, Lactate Dehydrogenase, (indicates some kind of organ tissue damage) has a range of 375 - 750 or so, he was at 1555. Saturday, miserable all darn day. Started him on Lasix (a diuretic) to try to start getting rid of the excess fluid. Pulmonary doctor informed me this day that Ampho-B can cause fever spikes and shivering (nurses call it "shake & bake"). Would have been nice to know before they started him on it so I wasn't freaking out when it happened. Bili is up to 2.0. Sunday - AFEBRILE (no fever) - for the first time in 8 days. YIPPEE!!!!!!! This comes 48 hours or so after beginning the Ampho-terrible. He lost enough fluid

from the Lasix to lose 3.5 cm around his belly. He's starting to itch, however. Monday I had the nurse pull up his labs from the morning, so I can check his LFT's. His Bili is now up to 3.7. No wonder he's itching. And of course, I start worrying about his liver. But his other numbers are still just fine. Very confusing. At this point we had 5 services working on . His usuals of GI, Endocrine, and Pulmonary. Then we added in Infectious Diseases because of the fevers and need for antibiotics and anti-fungal meds. Then we added in Renal, because of needing to get rid of this extra fluid without screwing up his electolytes when he already has diabetes insipidus. There was also discussion back and forth about whether or not to do a bronchoscopy to check out the inside of his lung. By the way, because of trying to get this excess fluid off of him, they also put him on a

fluid restriction. He can't have more than 500 ml per shift orally. Which was absolute torture to him the first few days when his sodium levels were really high. Once they came down, however, with the help of the Lasix, that's gotten more tolerable for him. Now we're to today, Tuesday morning. I talked to every service today that has him, with the exception of Renal. The decision was made NOT to do the bronch, because he's been without fevers for 2 days as of today, and has been on the Ampho for 5 days, so we likely wouldn't find anything, now, anyway, and with his platelets still being "iffy" (in the 60's), it'd be more risky to him than it would be helpful. The Peds Surg team was asked to come consult because it was noticed that his appendix was included in the inflammation along with everything else on his side abdomen, and they wanted their opinion, along with whether or not we should biopsy the

enlarged lymph node in his lung. The answer was "no" to the lymph node biopsy right now, and the appendix wasn't mentioned. HOWEVER, they do feel that 's gall bladder is highly likely to be the cause of all the abdominal pain he has all the time. 's liver is so HUGE that his gall bladder, which is normally supposed to be up near the rib cage by the stomach and liver (http://www.nlm.nih.gov/medlineplus/ency/imagepages/19574.htm), is way down in his abdomen, closer to his belly button area. They want to do a scan to look at his liver and gall bladder to decide if we need to discuss removing his gall bladder altogether. If that's going to help his pain, I'm all for it. He had this same scan back in October or November of 05, shortly after his first couple of ERCP's. Apparently the functioning of the liver and gall bladder weren't so hot, because

his gall bladder never showed up on the scan. The techs kept asking me if it had been removed. So that brings us up to a grand total of SIX services on him, now. Oh, and I also discovered some other interesting facts about Ampho-terrible. Here are the listed side effects of this lovely drug: "Side effects Very often a most serious acute reaction after the infusion (1 to 3 hours later) is noted consisting of fever, shaking chills, hypotension, anorexia, nausea, vomiting, headache, dyspnea, and tachypnea. This reaction sometimes subsides with later applications of the drug and may in part be due to histamine liberation. An increase in prostaglandin-synthesis may also play a role. Often the most difficult decision has to be made, whether the fever is disease- or drug-related. In order to decrease the likelihood and severity of the symptoms, initial doses should be low and increased slowly. The liposomal preparation obviously has a lower incidence of the syndrome. Acetaminophen, pethidine, diphenhydramine and/or hydrocortisone have all be used to treat or prevent the

syndrome, but the prophylactic use of these drugs should be limited. Nephrotoxicity (kidney damage) is a major issue and can be severe and/or irreversible. It is much milder when amphotericin B is delivered in liposomes (AmBisome). Electrolyte imbalances (e.g. hypokalemia and hypocalcemia) may also occur. Increased liver enzymes and hepatotoxicity up to acute liver failure, several forms of anemia and other blood dyscrasias (leukopenia, thrombopenia), serious cardiac arrhythmias (including ventricular fibrillation), and cardiac

failure have also been reported frequently. Skin reactions, including serious forms, are also possible." So I figure that explains the increased Biliruben level. I mentioned this to the resident tonight, who seemed rather impressed that I found that, as they were puzzled themselves about what was going on there. (I'm cool - oh yeah - uh huh - it's my birthday!) So AAAAAAAAAAAAAAAAAnyway. I have no idea how much longer is going to be in for. Poor dude. It never frickin ends for this kid. And it's always some whacked out off the wall thing that comes up with him. And that's OUR current update. Hope this finds everyone else doing better. An exhausted Ami Ami mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, Hypothyroid, GERD, High BP, ADD, Anemia, Osteopenia, Gastroperesis, Varices mom to Emma - 13 yrs - Migraines stepmom to - 14 yrs - ADHD, ODD ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Building a website is a piece of cake. Yahoo! Small Business gives you all the tools to get online.

[Guest guest]

I continue to pray for you and . If I could do more I would.

Ian

was admitted last weekend on Saturday night because he'd been running a fever all day, in spite of having been on an IV antibiotic for 2 weeks at home.

They started him on Vancomycin and Ceftaz Saturday night, along with doing chest x-rays, then added in Clindamycin and did abdominal x-rays & ultrasound Sunday.

Monday he had an MRCP, because Dr. Khan thought he might be developing new strictures in his bile ducts since he's had his stents out since December. All we found was that his ducts inside and outside his liver are dilated, which is not changed from earlier imaging studies.

By Tuesday he was still febrile (running fevers), so the Ceftaz was switched out for Imipenem. At this time we've got 3 hard hitting, wide coverage IV antibiotics on board. And he's still running fevers.

Wednesday comes along and now he has a chest/abdominal/pelvis CT scan. THIS time we come up with all kinds of stuff, including right side pleural effusion (fluid between the membranes surround his lung), possible esophagitis (inflammation of the esophagus), possible hiatal hernia (stomach muscle bulging up through the diaphram), ascites (fluid in the abdominal cavity), dilation of the bile ducts (we already knew that), enlarged lymph nodes in and around his right lung (indicating infection, which is the likely reason for the fluid) and to consider the option of a fungal infection. The only positive finding was that the colitis (inflammation of the colon) that he's had on the right side looked improved from his CT in February.

Wednesday night he ends up needing to be put on oxygen again because his levels were dropping. Heart rate is increasing.

Thursday they put him on Amphotericin B - a NASTY anti-fungal medication with horrible side effects. (A former resident of 's who is now Peds Behavioral doc said they usually called " Ampho-terrible " because it's so nasty.) They also scheduled him to go to Interventional Radiology on Friday to have the fluid drawn off from around his lung. (IR is where they do things inside the body with the help of x-ray, ultrasound, CT scan, etc, to see where they need to go.) HOWEVER, his platelets and other blood counts had been slowly dropping through the week, and his platelet level was now too low for them to do the procedure with out giving him more platelets first. Otherwise, he wouldn't be able to clot after the procedure and would just keep bleeding. (Normal range for platelets is 150 - 350. was down to 25 by Thursday.) So between Thursday night and Friday afternoon they gave him 3 or 4 packs of platelets to get him to a level where they were comfortable, then had to transfuse him, also, because of his other blood count levels being so low. Thursday night or Friday morning he also spiked his temp up over 103 and lay in bed shivering almost uncontrollably. By this point, I was really starting to get scared.

Friday afternoon we go down to IR to have the procedure done for the effusion. They ended up pulling off 150 cc's of fluid from around his lung. (Putting it in perspective, that's close to have a soda can worth.) One would have expected his breathing and oxygen levels to improve. They, instead, got much worse. He went from 1 liter of oxygen to 5, his heart rate was in the 150's, and I'd never seen him work that hard to breathe, even with pneumonia as a baby or with two collapsed lungs at one time. So far, his LFT's are all looking okay enough. Biliruben has been holding pretty steady at 1.7 all week (high end of normal is 1.3). ALT is normal. AST is in the 70's. (range on both of those is 0-50). ALP is in the 200's, right in the middle of range. GGT is 414, quite a ways above range, but not nearly the worst he's been there. And a new one, Lactate Dehydrogenase, (indicates some kind of organ tissue damage) has a range of 375 - 750 or so, he was at 1555.

Saturday, miserable all darn day. Started him on Lasix (a diuretic) to try to start getting rid of the excess fluid. Pulmonary doctor informed me this day that Ampho-B can cause fever spikes and shivering (nurses call it " shake & bake " ). Would have been nice to know before they started him on it so I wasn't freaking out when it happened. Bili is up to 2.0.

Sunday - AFEBRILE (no fever) - for the first time in 8 days. YIPPEE!!!!!!! This comes 48 hours or so after beginning the Ampho-terrible. He lost enough fluid from the Lasix to lose 3.5 cm around his belly. He's starting to itch, however.

Monday I had the nurse pull up his labs from the morning, so I can check his LFT's. His Bili is now up to 3.7. No wonder he's itching. And of course, I start worrying about his liver. But his other numbers are still just fine. Very confusing. At this point we had 5 services working on . His usuals of GI, Endocrine, and Pulmonary. Then we added in Infectious Diseases because of the fevers and need for antibiotics and anti-fungal meds. Then we added in Renal, because of needing to get rid of this extra fluid without screwing up his electolytes when he already has diabetes insipidus. There was also discussion back and forth about whether or not to do a bronchoscopy to check out the inside of his lung. By the way, because of trying to get this excess fluid off of him, they also put him on a fluid restriction. He can't have more than 500 ml per shift orally. Which was absolute torture to him the first few days when his sodium levels were really high. Once they came down, however, with the help of the Lasix, that's gotten more tolerable for him.

Now we're to today, Tuesday morning. I talked to every service today that has him, with the exception of Renal. The decision was made NOT to do the bronch, because he's been without fevers for 2 days as of today, and has been on the Ampho for 5 days, so we likely wouldn't find anything, now, anyway, and with his platelets still being " iffy " (in the 60's), it'd be more risky to him than it would be helpful. The Peds Surg team was asked to come consult because it was noticed that his appendix was included in the inflammation along with everything else on his side abdomen, and they wanted their opinion, along with whether or not we should biopsy the enlarged lymph node in his lung. The answer was " no " to the lymph node biopsy right now, and the appendix wasn't mentioned. HOWEVER, they do feel that 's gall bladder is highly likely to be the cause of all the abdominal pain he has all the time. 's liver is so HUGE that his gall bladder, which is normally supposed to be up near the rib cage by the stomach and liver (

http://www.nlm.nih.gov/medlineplus/ency/imagepages/19574.htm), is way down in his abdomen, closer to his belly button area. They want to do a scan to look at his liver and gall bladder to decide if we need to discuss removing his gall bladder altogether. If that's going to help his pain, I'm all for it. He had this same scan back in October or November of 05, shortly after his first couple of ERCP's. Apparently the functioning of the liver and gall bladder weren't so hot, because his gall bladder never showed up on the scan. The techs kept asking me if it had been removed. So that brings us up to a grand total of SIX services on him, now.

Oh, and I also discovered some other interesting facts about Ampho-terrible. Here are the listed side effects of this lovely drug:

" Side effects

Very often a most serious acute reaction after the infusion (1 to 3 hours later) is noted consisting of

fever, shaking chills,

hypotension, anorexia,

nausea, vomiting,

headache, dyspnea, and

tachypnea. This reaction sometimes subsides with later applications of the drug and may in part be due to histamine liberation. An increase in

prostaglandin-synthesis may also play a role. Often the most difficult decision has to be made, whether the fever is disease- or drug-related. In order to decrease the likelihood and severity of the symptoms, initial doses should be low and increased slowly. The liposomal preparation obviously has a lower incidence of the syndrome. Acetaminophen, pethidine, diphenhydramine and/or hydrocortisone have all be used to treat or prevent the syndrome, but the prophylactic use of these drugs should be limited.

Nephrotoxicity (kidney damage) is a major issue and can be severe and/or irreversible. It is much milder when amphotericin B is delivered in liposomes (AmBisome). Electrolyte imbalances (e.g. hypokalemia and hypocalcemia) may also occur.

Increased liver enzymes and hepatotoxicity up to acute liver failure, several forms of anemia and other blood dyscrasias (leukopenia, thrombopenia), serious cardiac arrhythmias (including ventricular fibrillation), and cardiac failure have also been reported frequently. Skin reactions, including serious forms, are also possible. "

So I figure that explains the increased Biliruben level. I mentioned this to the resident tonight, who seemed rather impressed that I found that, as they were puzzled themselves about what was going on there. (I'm cool - oh yeah - uh huh - it's my birthday!)

So AAAAAAAAAAAAAAAAAnyway. I have no idea how much longer is going to be in for. Poor dude. It never frickin ends for this kid. And it's always some whacked out off the wall thing that comes up with him.

And that's OUR current update. Hope this finds everyone else doing better.

An exhausted Ami

Ami

mom to - 9 yrs - Double Lung Tx 2/26/2006, PSC - Pre-Liver Tx, Central DI, Steroid Induced Diabetes, Hypothyroid, GERD, High BP, ADD, Anemia, Osteopenia, Gastroperesis, Varices

mom to Emma - 13 yrs - Migraines

stepmom to - 14 yrs - ADHD, ODD

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Building a website is a piece of cake. Yahoo! Small Business gives you

all the tools to get online.

-- Ian Cribb

[Guest guest]

Oh Ami,

When I saw this e-mail come I just didn't even know what to say. You

have been through the ringer with poor . Did he at least get out

and get some sun while he was outpatient for a while? What about you?

I know that sound petty, but it does help. I know Noah sure did need

it. He was so pasty, and pale and needed the vit D so bad so his

calcium could get metabolized and he just felt better. It lifted his

spirits so. Maybe we can catch up on YIM sometime. I haven't seen

you on forever. I miss our chats.

Love you,

Mom to Noah-9 (IBD, PSC, Osteopenia- 2005; psoriatic arthritis- 2007)

www.caringbridge.org/visit/noahwmartens