Finally....a Molly update (via auntie Nicole)

It's been awhile since Amy updated the blog, so while I am here with Molly I am going to do it (this is Amy's sister here giving an update).  Thursday night, Tim got a call at 2:30 am saying that they needed to get over to the hospital that Molly's potassium level was critically high, her heart rate was low and her CO2 was high.  She's always critical, but with her potassium being so high she could have gone into cardiac arrest.  Then her kidneys started to fail, wasn't producing urine and she is in acute kidney failure.  She has been on diuretics to pee and get fluid off of her, but they weren't working.  Her belly swelled up, alot, and was pushing on her lungs.  Initially they thought she had what's called abdominal compartment syndrome.  I've heard of this in legs and things like this, but personally have never heard of this in the abdomen.  So something was swelling, still don't know what, pressure builds up and presses on everything else.  Likely, this was impeding the function of the kidneys which caused the acute kidney failure.  Treatment of this is to open her belly and relieve the pressure.  So the attending physician wanted to do this surgery, she had the mindset that this is what would do Molly in for lack of better words.  She felt she might make it through the surgery, but would surely get some sort of infection that would kill her.  So she gives the option at this point, do  Amy and Tim want to go ahead with surgery or do they want to just make "Molly comfortable".  We know what they meant by this, however, they never say it outright and never give a prognosis.  So the surgeon comes to evaluate her and doesn't believe the pressure was high enough to warrant surgery.  It's always two sided here and none of the physicians are on the same page and certainly seem to not communicate with each other.  So the next option, put Molly on dialysis which pretty much does the functioning for the kidneys. 

DIALYSIS: a process for removing waste and excess water from the blood, and is used primarily as an artificial replacement for lost kidney function in people with renal failure.  When healthy, the kidneys maintain the body's internal equilibrium of water and minerals (sodium, potassium, chloride, calcium, phosphorus, magnesium, sulfate).


So here we go with the dialysis.  She would need what's called a portacath placed into a main vein which hooks up to the dialysis machine.  She only has two options of where this can be placed because all her other main veins are currently being used.  So two options, her femoral vein or her jugular vein.  Possible complications of both:  femoral vein is a long vein that goes into the kidneys, however, since it is long then it may not make it all the way to the kidneys to dialyse.  Plus, with all the swelling and the edema, there was potential for that portacath being "squished" and not functioning as it should.  Onto the jugular vein.  You have two, one on each side of your neck.  The right one has been used previously for her broviac, but is the better option.  Ultrasound showed that it was occluded and so could not be used.  So we are onto the left jugular.  It is open, and usable, but possible complication.  It doesn't work, closes up, and the blood backs up into the brain.  This means possible stroke. 

After Tim and Amy discuss this and I chime in, we talk to the surgeon who says jugular is better choice but they can wait and come up with a decisive choice.  Then he speaks with the attending and says this is critical and she needs this procedure.  So, the decision is made to place the catheter into the jugular vein.  The surgeon talks about complications and all that and gets the consent from Amy.  He's all encouraging and tells the risks of the procedure, but is cordial about everything.  Then the anesthesiologist comes and needs parents consent.  At this point, the room is ready for the procedure, Amy and Tim were talking to Molly and giving her kisses (I was able to give her smooches on her lips before I left the room, first time for that).  So this anesthesiologist is going over risk and possible complications and then tells Amy and Tim that she is aware that Molly will not survive this surgery.  She didn't say it was a possible risk. She said SHE WILL NOT MAKE IT THROUGH THIS PROCEDURE. Well this was a shock as no one had mentioned the fact that they didn't expect her to survive the procedure.  This threw Tim and Amy (mostly Amy) into a tailspin.  I was watching from a far at this point.  Voices were raised at this point and Tim and Amy were furious.  They come over to me, I ask that the surgeon come over.  He just happened to walk by at this point.  He says hmm, well I wasn't aware of this, with a very puzzled look on his face.  As I said previously, these doctors DO NOT speak to each other and so you hear something from one and then hear something completely different from another.  Anesthesiologist comes over and I ask where she got this information from about Molly not making it....she says the NURSING staff.  What the?  You didn't speak with the attending physician about this?  Amy was pissed.  She was almost up in the anesthesiologist's face at one point saying something like she wanted to punch her in the face or something.  It's all sort of a blur because we were all pissed at this point....even Tim and he even made me afraid lol. 

So we go out to the waiting room.  We do not know what to expect.  After an hour, the Surgery Fellow said she made it through fine and they were cleaning everything up.  Phew....relief.  Finally the surgeon comes out and says everything went fine.  So....she did okay over night, they were able to stop her diuretics and is off her dopamine and norepinephrine.  All good things.  She is peeing now, her labs look pretty good.  Kidney doctor says likely another 24 hours and then take her off the dialysis and see if her kidneys function on her own.  This is where we are at at this point.  I asked about a liver transplant, when would she actually be able to get on this list.  But all you can get out of these people is "today she is not able to get on the list".  Okay, but what would be the criteria for her to get on the list?  Nope, never a straight answer. 

At this point, no one knows what caused the kidney failure or the acute swelling.  I had initally planned on coming up here today to see Molly in action.  She had been moving and was awake and off the paralytic.  At least she is not paralyzed, just super doped up.  I was able to see eyes open a little and she cries when she needs her methodone, which is so sad to see.  She's such a sweet little girl. 

So right now it's day to day, almost every 4 hours by every 4 hours, because that's when the next set of labs are drawn.  The short term goal right now is to get her off the dialysis machine and get her kidneys functioning.  Then after that, not sure.  They need to see what's up with her intestines because it may have all stemmed from this. 

Right now, she is still here with us, not in pain, and doing okay.