One Year Ago Today: 12/28/2012 - Blood, Bleeding, & Discovering the Source

(12/28/2012, Friday) Today began with me waking Evie up a bit earlier than she may have on her own around 0815. She'd had a bloody stool of about 250 ml's. I maneuvered the biggest chair in the room beside her bed so that I could have her positioned ready to interact with the physical therapists at 0830 so we'd be done in time for dialysis. 0830 came and went--PT was a no show.

Around 0900 I noticed the blanket I'd folded over her lap was turning red (you guessed it, that's a bad sign!) I called a nurse into the room and we went about handling the scenario. Luckily, like a good boy scout, I had put one of their super absorbent pads down underneath her, so it wasn't nearly as horrific as it would have been. As it was, blood was streaming everywhere, and clean up was rather time consuming. Typically we weigh everything afterwards when this happens so that we know how much blood Evie lost... there was too much to weigh today, but a low estimate is that she lost over half a liter.

Around this point, the doctors came by for rounds and we discussed the plans for today. Turns out that a CT scan wasn't a valid option for analysis of the GI bleed for the same reason the MRI cannot work in this scenario -- the dye they use as a tracer is too harsh on failed kidneys and would cause further damage. So the new plan included:

• Dialysis with blood transfusions
• Red Blood Cell (RBC) Nuclear Tag Scan (GI Bleeding Study performed in Nuclear Medicine)
• Plasmapheresis

Shortly after rounds were over, Evie had more blood loss, just shy of 200 ml's. She was in a bad place. She'd lost so much blood, so quickly, and her daily liquid intake is so low--I nearly forgot to mention it, but she'd also thrown up twice by this point, not very much, mostly stomach acid and mucous. It was at this point that I figured she couldn't get feeling any worse--at which point she was connected to the dialysis machine. It got worse.

It was rather reminiscent of the evening of the ninth of December. As you may recall (or perhaps as your email inbox may recall) she was low on blood then too, but today she was ridiculously low. When you start hemodialysis, at first you are essentially bleeding out, because no blood comes back right away. Evie's body was not about to put up with that--her heart rate and blood pressure went on a trip to a bad place, and she began shrieking in agony. Having witnessed this some three weeks ago, I quickly convinced the dialysis nurse to cycle back the blood--so in the end this particular instance/event wasn't as traumatic for her.

Instead of waiting to do the transfusion in the middle of dialysis (as is their goal) we immediately began transfusing one unit. Once she'd had about half of that, we re-initiated dialysis, and shortly after started another unit of blood via dialysis. Due to all the fresh non-Evie blood coursing through the dialysis machine we had clotting issues about half of the way through the process. Luckily, we were able to return her blood that was in the system (hooray!) and quickly replace all the lines and restart. In the end, she took the two units of blood, and had 1.83 liters of fluid removed from her system. This is an extreme amount, until you consider that she'd had nearly 1.5 liters added to her system via the transfusions, and saline which is added via the process. It still is an extreme amount when you consider that she'd lost 1 liter of fluid via the blood loss, at least it is in my opinion, but when your kidneys don't work, there is no way for you body to excrete it on its own, so it has to come out this way--nevertheless and notwithstanding, it is a rough tiring process for anyone, let alone a very sick, weak 8 year old.

Due to all the drama, she didn't finish dialysis until after 1500, whereas she should have been done by noon. At 1600 we went down to nuclear medicine for her RBC. They withdrew some blood, and then marked it with gamma radiation, and put it back (for 12 or so hours, she had more in common with the incredible hulk than an affinity for green) Evie watched "Gnomeo & Juliet" while she waited for the test to be over; however, it took about 2.5 hours, so after that, I read to her for a while, then she slept, then she watched the last half of "Underdog".

The results were positive (not a shock). The bleeding is discrete (fairly localized) in the large intestine, distal from the stomach, in close proximity to the spleen (although as you may recall (as I did not) that given the order of things, the spleen is not involved, it is referenced in this case in a similar fashion to me telling people I live near Raleigh. At any rate, we finished the test and got back to the room at about 1900 or so. Too late in the day to start plasmapheresis. It's first on the docket tomorrow.

Other tidbits and discussion:

• Evie lost a liter of blood today, and had 2 transfusions to replace some of it.
   
• She required 4 units of insulin.
   
• Her oxygen was decreased to 2 liters today... should be able to wean more tomorrow.
  

So now it is a discussion of whether Evie is stable enough for surgery, and whether further reconnoitering of the issue is necessary. Her GI bleed is a lower GI deal, so an endoscopy won't work (either as reconnaissance or a platform for repair) as it can only reach the upper GI tract. A colonoscopy should be able to spy out more detailed information--specifically where the bleed is and how localized it is (whether it is diffused or a tear/hole) but given Evie's state, one questions whether the additional information is worth it--a colonoscopy is not a platform for being able to fix this type of issue. One could argue though, that the RBC is not specific enough and is only two dimensional, and as things stack on top of each other in that area more information is needed.

In any case, the plan for Saturday is to start with the plasmapheresis, then do more dialysis. After that we'll either have a colonoscopy likely followed by a surgery, or simply a surgery. It is suspected she won't be done with plasmapheresis and dialysis until around 1500.

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.