So last I left off, we had (hopefully) discovered why Ananya was leaking so much fluid from her belly (ascites) - the biopsy done Friday revealed rejection. Steroids were started in the hope of tamping the rejection down, and we were in a wait and see pattern.
Over the weekend Ananya's ascites did definitely get better, though she continues to still have a large amount of ascites. I really really hope that this means that this rejection she's having is steroid responsive. Ideally the ascites would be completely gone, but I would be a lot more worried if the amount of ascites she was having hadn't changed. My other worry (as I had noted in the last post) was supporting her without complications through this episode of massive ascites. The huge leakage of fluid from the vascular system into the belly that occurs makes fluid management difficult. Ananya is not able to drink enough fluid to keep up with the large losses of fluid into the belly. Since the fluid isn't in the blood, the kidneys don't see as much volume and begin to complain - they 'complain' by appropriately not making much urine. The kidney thinks you're in the desert b/c its not seeing any fluid and goes into massive fluid preservation mode. Of course, the truth is the body has a huge amount of fluid - its just in the belly and not in the vascular system. This is called total body volume overload but reduced effective arterial blood volume. Eventually the kidney will start to show some wear and damage. The usual marker used for kidney function is Creatinine. Ishani's creatinine which had been hanging at .2 - .3 went to .4. Her Blood urea nitrogen (BUN) also sky rocketed from a low of 4 to 21!. The ratio of BUN to creatinine is a poor man's measure of dehydration. A high ratio indicates dehydration. Now things are not as easy as this b/c there are multiple other confounders. She is on an antibiotic called Bactrim that has been shown to raise creatinine and the steroids she started in massive doses by itself raises the BUN. So what's going on?
In the face of this myriad of data - one thing was clear - Ishani was simply not making wet diapers. She would have the barest smidgeon of wetness - when she used to have 6-8 v. wet diapers in the past. That was enough to make my plea to the team that she was still dry and may need some extra volume. Sure enough, after receiving extra volume in the afternoon on sunday, Ananya had a nice wet diaper. and continued to have a couple more wet diapers. Now why should I be so concerned? Well Prograf - which is the immune suppressive medicine Ananya will be on for the rest of her life has as a complication renal dysfunction. With older generations of drugs as many as 70% of kids would manifest some renal dysfunction over the long term. The amount of renal dysfunction is related to where your kidney function starts with and the total dose of immune medicine (prograf) you recieve. So I want to make sure the team is on top of making sure she doesn't come out of this massive ascites episode with some renal dysfunction thats significant in the long run. Being an adult MD I'm still not clear about what the significance of a Cr. rise from .2 to .4 is, but I am concerned if she's making small amounts of urine- b/c it suggest a kidney under stress. After all this fluid, etc. what happened to her kidney function - Her Cr. stayed at .4 and her BUN that had made a steady march up came down from 21 to 17. More importantly her wet diapers continue. So I'll continue to research the relevance of the Cr of .4 in a 1 year old, but am a little mollified about the urine output and a BUN going in the right direction.
I'm still hoping this ascites vanishes down to nothing soon....
Monday, February 25, 2008
Saturday, February 23, 2008
complications post transplant
Ananya developed massive ascites about 4 days after the liver transplant. Ascites is basically fluid that accumulates in the abdominal cavity. After transplant some fluid is expected - not the amount Ananya had. She weighs 18 pounds and was having about 2 pounds of fluid leaking into her abdomen daily. After transplant 2 drains are left in the abdomen. The main reason is to allow early diagnosis of operative complications like bile leak or bleeding. In this case we escaped those complications but did get a relatively uncommon complication of massive ascites.
Massive ascites is usually a manifestation of end stage liver disease and is not a pretty sight - the belly gets massively distended with fluid and the short term fix is to use a needle
to drain the fluid. Ananya had some drains already so she just kept pouring out of them. Along with this she stopped making urine b/c so much fluid was going into the abdomen. Also her fluid status became difficult to manage - she needed fluid to replace everything being lost in the belly but giving her more fluid means more fluid goes in the belly, the lungs - basically every where but where the fluid needs to be. Ananya was listless, tired and looked awful which made me terrified. The primary caretakers on the floor are physician assistants who are the eyes and ears of the transplant surgeons. They are v. Good but its a tad disconcerting feeling that your daughter is decompensating and there are no doctors around. Suffice it to say, I was highly stressed and wanted decisions made now by a doc before my daughter got worse. Too many times in hospitals I see bad things happen to patients b/c no intervention is made when the patient first starts to demonstrate warning signs. So as my daughters oxygen levels are dropping probably b/c of fluids we're giving her the solution IS NOT to just put her on oxygen.
When the transplant team did get up here Ananya was looking a little better but still cruddy. The team said that ascites sometimes just happens and it would get better on its own. Actually massive ascites does not happen frequently - docs would rather pretend to know what's going on than admit they're not sure. I was not sure if we would be able to support her through this b/c managing fluid status is so difficult and its not difficult to send someone into kidney or respiratory failure. So when told that rejection was a possibility, I inquired about empiric treatment of rejection (w/ steroids) followed by a biopsy later in the day. If the biopsy definitely ruled out rejection the steroids could be stopped. They said it was pretty low prob that it was rejection w/ liver #'s looking so good. So the biopsy happened the next day, ishani continued to leak out but seemed to be holding her own. (still looking cruddy) the results came back at 5 pm the same day - it was rejection. That was yesterday - she's now on steroids and we're hoping she responds to it......
Massive ascites is usually a manifestation of end stage liver disease and is not a pretty sight - the belly gets massively distended with fluid and the short term fix is to use a needle
to drain the fluid. Ananya had some drains already so she just kept pouring out of them. Along with this she stopped making urine b/c so much fluid was going into the abdomen. Also her fluid status became difficult to manage - she needed fluid to replace everything being lost in the belly but giving her more fluid means more fluid goes in the belly, the lungs - basically every where but where the fluid needs to be. Ananya was listless, tired and looked awful which made me terrified. The primary caretakers on the floor are physician assistants who are the eyes and ears of the transplant surgeons. They are v. Good but its a tad disconcerting feeling that your daughter is decompensating and there are no doctors around. Suffice it to say, I was highly stressed and wanted decisions made now by a doc before my daughter got worse. Too many times in hospitals I see bad things happen to patients b/c no intervention is made when the patient first starts to demonstrate warning signs. So as my daughters oxygen levels are dropping probably b/c of fluids we're giving her the solution IS NOT to just put her on oxygen.
When the transplant team did get up here Ananya was looking a little better but still cruddy. The team said that ascites sometimes just happens and it would get better on its own. Actually massive ascites does not happen frequently - docs would rather pretend to know what's going on than admit they're not sure. I was not sure if we would be able to support her through this b/c managing fluid status is so difficult and its not difficult to send someone into kidney or respiratory failure. So when told that rejection was a possibility, I inquired about empiric treatment of rejection (w/ steroids) followed by a biopsy later in the day. If the biopsy definitely ruled out rejection the steroids could be stopped. They said it was pretty low prob that it was rejection w/ liver #'s looking so good. So the biopsy happened the next day, ishani continued to leak out but seemed to be holding her own. (still looking cruddy) the results came back at 5 pm the same day - it was rejection. That was yesterday - she's now on steroids and we're hoping she responds to it......
Monday, February 18, 2008
Being in hospitals too long is bad for you
So last I posted Ananya had a fever which was a little bit of a bummer. She got started on some heavy duty antibiotics given her recent surgery and immunosuppression, and risk factors like being on the ventilator for 3.5 days. Interestingly the v. early infections after transplant are probably not related to being immunosuppressed - typically those bugs are bigger players later in the game - I assume b/c it takes some time to whack down your immune system. I was a little peeved Ananya still had her foley catheter (bladder catheter) still in. All these lines and tubes going into the body are great sources of infection - so the sooner those can come out safely the better. The foley had really outlived its usefulness...and I had asked the day before and got some bulls*&*t answer from the nurse about monitoring output. Its surprising to see (now that I'm on the other side) how much the nurses act as gatekeepers of information. There is constant censoring of information going on between the nurses and doctors - the nurses v. much shade their presentations of the patients. Anyway, nurses are probably the most important part of the healthcare team - but if you don't like the answer you're getting from a RN - don't be afraid to kick it up the doctor - just do it in a way that avoids upsetting the nurse..
So I asked about the foley catheter this morning when the transplant team was rounding and they were similarly excited to get the foley out. I also came to find out that Ananya's nurse for the day also was taking care of another post liver transplant kid next door. Which ordinarily would be fine - except this particular poor kid was growing out some super resistant bacteria. I let the team know that I was not happy about the nursing assigments - they said they'd see what they could do but emphasized to the nurse in the meantime about gloves/gowns/hygiene. So by evening shift the assignments had changed, but a last minute switch by the RNs again left us with a nurse covering Ananya and the kid with super resistant bugs. That soured my mood quite a bit. If Ananya does get the same super resistant bug that the other kid has - I may have a cow. One thing is always painfully clear - no one cares more about the welfare of your loved one than you. Seems simple but I think there's a sense when you go to a hospital the caregivers do everything they can. The sad truth is that for the large part of the team - you represent a job...folks will do the best they can - as long as they're not too inconvenienced. So our RN will work her tail off - but the system fails her. you could blame the charge nurse, but she's probably leaned on by administration to optimize patient-nurse rations - so in the end its always the suits/money counters who are to blame. Health care is simply not an industry that does well when the bottom line is the bottom line.
Ok, ok, enough editorializing. Ananya's fever responds to tylenol - it seemed to break early this am - without tylenol. hopefully it stays down. Maybe its due to tat collapsed right upper lobe that we need to open up with some good chest physical therapy...Otherwise liver numbers look good, ultrasounds i'm told of the liver look good as well. which makes me happy despite the little day to day frustrations.
So I asked about the foley catheter this morning when the transplant team was rounding and they were similarly excited to get the foley out. I also came to find out that Ananya's nurse for the day also was taking care of another post liver transplant kid next door. Which ordinarily would be fine - except this particular poor kid was growing out some super resistant bacteria. I let the team know that I was not happy about the nursing assigments - they said they'd see what they could do but emphasized to the nurse in the meantime about gloves/gowns/hygiene. So by evening shift the assignments had changed, but a last minute switch by the RNs again left us with a nurse covering Ananya and the kid with super resistant bugs. That soured my mood quite a bit. If Ananya does get the same super resistant bug that the other kid has - I may have a cow. One thing is always painfully clear - no one cares more about the welfare of your loved one than you. Seems simple but I think there's a sense when you go to a hospital the caregivers do everything they can. The sad truth is that for the large part of the team - you represent a job...folks will do the best they can - as long as they're not too inconvenienced. So our RN will work her tail off - but the system fails her. you could blame the charge nurse, but she's probably leaned on by administration to optimize patient-nurse rations - so in the end its always the suits/money counters who are to blame. Health care is simply not an industry that does well when the bottom line is the bottom line.
Ok, ok, enough editorializing. Ananya's fever responds to tylenol - it seemed to break early this am - without tylenol. hopefully it stays down. Maybe its due to tat collapsed right upper lobe that we need to open up with some good chest physical therapy...Otherwise liver numbers look good, ultrasounds i'm told of the liver look good as well. which makes me happy despite the little day to day frustrations.
Fever
So Ananya has a fever. Her transplant was Tuesday night - She spiked Saturday early morning about 2:00 am. After extubation she's been doing these worrisome episodes where she breathes really really fast (tachypnea) about 60-80. Earlier this afternoon the team thought she was a little anxious and gave her some fentanyl/ativan which she responded to beautifully. My wife woke me up at about 1:30 am to say that Ishani was getting a cxr b/c she was working so hard - when I came down and saw her - she really did look like she was working hard - nasal flaring - some belly breaths, I listened to her lungs and she sounded junky and she was tachycardic to the 170's - so I did some chest thumping (chest pt) and when I was doing it thought she was a little warm. The Nurse said her axillary temp had been ok 37. something (anything over 38 (100.4) is considered a temp in hospitals) but when we got a rectal temp she was 39.1 (102.4). So that certainly explains the tachycardia and tachypnea. We're giving her some tylenol and she'll need some big gun antibiotics to cover hospital bugs. Her CXR looked unchanged from before - so hopefully its not in the lungs ( though that RUL still remains collapsed). Typically this early post transplant line and catheter (she has a central line - a large iv going into her jugular vein and a catheter in her bladder (foley)) related infections would predominate. though about 20% of these infections could be viral. Her belly is pretty soft and her output from the drains she has in her belly (JP drains) hasn't changed so I doubt she has anything brewing in her belly. The surgeons make lots of connections - one connection that may be prone to leakage and is a more serious complication is when the connection made between the donor livers bile duct and the recipients intestine breaks down. This would result in bile leaking into her abdominal cavity - which is one of the main reasons surgeons leave drains in the cavity. All right, more later! Keeping our fingers crossed that this is a minor bump....
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