One Year Ago Today: 12/5/2012 - Pancreatitis, Troubles Breathing, and a Changing of the Guard

(12/5/2012, Wednesday) I have a few items of clarification in no particular order as well as general thoughts on how today went:

• Evie has been undergoing both Hemodialysis and Plasmapheresis. The Hemodialysis takes up the slack of her kidneys. It both detoxifies her blood, as well as reduces the amount of liquid in her body. Since her kidneys produce no urine, she has no way to rid her body of excess liquid, thus the need to limit how much she can drink, otherwise she'll over hydrate. More on that later.
   
  The Plasmapheresis is to counteract the thrombocytopenia. Essentially, she has antibodies which are attacking her system, which isn't ideal. Plasmapheresis is a process that takes out whole blood, spins it to separate it into its component parts, tosses away her antibody laden plasma, takes new donor plasma and recombines it with the parts of her blood which were kept, and pushes that new mix back into her bloodstream. Good times. If you have donated blood in the past, you may want to consider looking into whether your local community needs platelet/plasma donors. You can donate 24 times per year, and it'll help folks like Evie. They tend to want AB, A+, and B+.
   
• Evie has also been diagnosed with acute pancreatitis. This means eating is what has been causing the agony in her stomach which causes her to writhe in pain, so for the next day or so, she doesn't get to eat or drink anything. Poor girl. We'll then get back on a chicken broth / jello / apple sauce regimen, but within a week or so, she should be back to asking for pizza. Only traumatic to her food craving, not too big a deal.
   
• I've become a fan of kidshealth.org as I struggle to provide the right amount of detail to my kids. It isn't a peer reviewed journal, but it seems to be well conceived and executed and I haven't seen any misinformation yet. Try checking out what they have to say about dialysis for instance. Not a bad resource, particularly if now is not a good time for you to fall asleep reading those peer reviewed medical journals.
   
• Today (12/5) marked the passing of the torch as Heather and I have traded places, so I am now with Evie at UNC. I'll be here until Sunday nightish. If TJ (18 months) could have verbalized his prayers tonight, he would have shown proper thanksgiving that his mother is home. He was elated to see her today, and enjoyed the time (albeit not the standoff distance) he had with Evie today. He was very pleased that she recognized he was waving to her. Someday that kid will talk. Someday.
   
• I had a good chance to talk with--shoot, what kind of doctor is she??? I think a urologist? (Actually, a nephrologist, also known as a kidney doctor) -- anyhoo, one of Evie's doctors. She was very helpful yet firm. It is becoming more and more apparent that my aforementioned Option 2 will win the race, yet they have tested her for all the suspect bugs (some several times) and all results have been negative.
   
• There are dialysis centers in Pinehurst, Southern Pines, and Carthage. (So within 10-15 from our house roughly.) Trouble is, they all specialize in taking care of old people.. handling a kid isn't their thing. Combine that with the fact that we don't want to hang out somewhere else killing 12 daytime hours a week, you can see why I'm already really leaning on the dialysis from home option, although one must consider all aspects of daily home dialysis. I'm guessing that will be hemodialysis like we've been doing here at the hospital, but I've also been reading about peritoneal dialysis. Both can actually be home options, so I need to ask more questions. I'm told insurance should not be an issue, as apparently medicaid/medicare somehow also kicks in with this scenario? (After some research, it looks like she'd need to be diagnosed with less than 15% productivity in her kidney's, and although they have never been that specific, I fear that the proverbial bar isn't set low enough for my kid not to qualify-- written more clearly: Evie is a shoe-in.)
   
• I've discovered that the surgery needed to provide the dialysis access is outpatient typically, so it should not impact any departure schedule that is dreamed up for us. With proper care and maintenance, Evie will be able to stay swimming--in chlorinated pools only. No more lakes/rivers/ocean/bathtubs. We'll take the good with the bad. I suspect a celebratory trip to Great Wolf Lodge in our future (we would've been there the next three days if it hadn't been for all of this craziness.)
   
• There is requisite training for at home dialysis and for the access itself. I've been told to plan to take a full week off of work for that.
   
• Still working on acquiring an address since we'll be here for at least two weeks.
   
• Let me give you an idea of how Evie's day was. It all started with a ridiculously poor (think newborn poor) night of sleep the night before:
  
  0800 -- Random transport chica comes to the room announcing it is time to go have dialysis.
  1100 -- TJ & Ty arrive, Ty swaps out with Heather -- TJ is elated, Evie is happy to see dad in dialysis.
  1230 -- Dialysis completed, transport to Plasmapheresis.
  1300 -- Evie is greenlit for lunch, it is ordered.
  1400 -- Evie's lunch arrives. She is a sparse eater.
  1600 -- Plasmapheresis completes. Evie voices concerns over terrible stomach pain.
  1700 -- It is determined that she drunk too much with lunch, and extra fluid was left in after the apheresis is making it difficult for her to breathe. She's diagnosed with acute pancreatitis. They determine further dialysis is necessary to rid her body of the excess fluid.
  1800 -- Begin round two of dialysis.
  2100 -- Round two ends.
  2200 -- Finally back in the room, begin another ridiculously poor night of sleep where her heart rate accelerates way too high, it is determined they took out too much fluid, IV drip to compensate, mild fever, continues to have struggles breathing, and is on oxygen. Calcium was low, had to fix it... etc.
  0330 -- she finally falls into what will pass for deep sleep.
  0400 -- morning blood draw -- you guessed it, she woke up.
  0500 -- morning weigh -- you guessed it, she woke up.
   
• All in all I'd guess various instrumentation audible alarms activated at least 30 or 40 times throughout the night, and the nurses came in for this that or the other thing nearly two dozen times. How well would you sleep? Throw on top of that a little girl that is wiggly, and is constantly moving at night, even when she is well. Then put her in a hospital bed, so desperate for sleep that she can't relax, and add 7 or so different wires that she constantly gets tangled in. Good times.
   
• The whole experience leads you to truly appreciate our Heavenly Father's design. Sure, most of us complain of having to get up to use the restroom, but how cool is that, that you don't have to be hooked to a machine for hours to do it? Parting thought: The hospital life makes the patient (and parent) feel like a kid. No idea what the schedule is for the next day, no real control over it either. I think I need to adjust my parenting style --- I don't want to be that guy.

DISCLAIMER: Posts Labeled "One Year Ago Today" are a record of what transpired when Evie first became ill.  The slightly edited text comes from emails which we sent to family to let them know what was happening, and to keep them updated.  These posts are usually long, but if you want to truly understand what life was like for us, and what led to this point, it makes for great "light" reading.