(12/30/2012, Sunday) [Horizontal lines indicate separate emails sent on this day.]
0430: Another bloody stool.
(If you're wondering what voice inflection to use for the prior sentence, I recommend a thick British accent, a la Michael Caine.)
Over 230 ml's. Her H&H numbers from her 0400 blood draw: hemoglobin 8.7, hematocrit 24.1%. For her age and weight normal/healthy
is 11.5 or higher for hemoglobin 35-45% for hematocrit. Her low
numbers indicate she's bleeding a fair amount, given all the extra blood
she's been given. The next transfusion is imminent--it will start
before I can finish writing this.
Someone Evelyn's size has about 83 ml's of blood per kilogram in their
body. Assuming she has not become further emaciated, she weighs
21 kilos. That means her body contains a grand total of approximately
1.75 liters of blood. The volume of each transfusion varies, but you can
count on each one containing at least 250 milliliters. That means
every drop of blood in her body has been replaced 3 times
during this hospitalization. In the past 24 hours she has lost (and had replaced) over 70% of her total blood volume.
1215: Evie is scheduled for an angiography (and hopefully an embolization) down in the Vascular Interventional
Radiology Department. They hope to begin around 1300 eastern.
I
think I'm mostly doing a decent job with handing over the things I
can't control, and not worrying about them. The real stressor for
me has been worrying about the actions I have taken (whether they were
right). There have already been several moments today in which I have been rather
worried about I have done. Allow me to explain.
0600 is when the plans for the day began to shift. I had a
conversation with the attending physician which may have been
the catalyst. I brought up the same facts and figures which I have outlined above regarding the number of transfusions compared to her total blood
volume, and brought up a few fancy terms I'd learned when it comes to
percentage of blood loss. (I understand enough only to be dangerous,
but we had a conversation regarding what
stage of
Hypervolemic Shock her
body was in at any given moment, and whether it was responsible to
suggest staying the course in the hopes that her body would simply stop
bleeding.)
It was at that point he decided to make the call to force
action--he called gastroenterology, pediatric surgery, vascular
interventional radiology, and nephrology and indicated they needed to
provide an outline of what each saw as the preferred way forward prior
to Evie getting finished with plasmapheresis (in which she obtained her
5th unit of blood in 24 hours).
Three potential courses of action were proposed which I had them also repeat to Heather via Skype.
- Do nothing, stay the course, hope she stops bleeding.
- Have the pediatric surgeons cut her open and remove the section of
her large intestine that the leak seemed to come from... after which she
would require a colostomy bag for while the large intestine healed, and possibly for long term depending on what was removed.
- Bite the bullet, inject dye which can harm even healthy functioning
kidneys so that an angiography could be done in hopes of finding the
leak(s) that needed to be embolized (plugged). Best case scenario, a
leak would be found, and fixed. Worst case scenario, the leakage could
be coming from a diffused area, and option 2 would have to occur anyway.
Immediately after the discussion, I returned to Evie's PICU room,
where she had just completed plasmapheresis. She looked, and seemed to
feel better than she had in more than a week.That made the decision to go ahead
with the procedure (and the associated negative side effects from dye)
difficult, as she seemed to be in a much better place, so it was easy
for doubt to creep in. (5 units of blood transfused in 24 hours when your body holds only 7 does wonders for
your disposition.)
I
began to have regrets that I had meddled and somewhat goaded the
attending physician into action. The action oriented options all sounded
crummy because they came with both known and unknown baggage I
didn't like. She looked so good that for a moment I considered option
one; however, I felt prompted by the Holy Ghost to recall what I
had earnestly prayed for the night before--that Evie's doctors would
be inspired to know what to do. This was followed up with a bit more
doubt--I'd meddled with the doctor's perspective, if I hadn't done it,
would they have gone down this path? Things were happening too fast,
and I
needed to stop, drop, and kneel.
So I did, and immediately I felt better. Prayer works.
I
called Heather back, and she pointed out that if ever there were a good
time to do the procedure, it was while Evie appeared stable--so we went
for it.
1515: After a 2 hour delay due to someone with more urgent need coming in,
they just got started at 1500 eastern. Could take
anywhere from 1.5 to 4 hours depending on what they find, and what
they're able to fix. This will be immediately followed by dialysis so
they can try to get rid of as much of the dye as possible otherwise it will cause more damage to Evie's kidneys. Heather arrived just prior to the procedure, and although the Ronald
McDonald House had no openings, she will be able to spend the night in
Chapel Hill at the house of the parents of a friend from work.
We gave Evie a special priesthood blessing just prior to the procedure -- our Bishop's
son was conveniently heading to Raleigh to visit his
sister, so he came by the hospital on his way there. Evie and I also had a
prayer with the anesthesiologists just before she got wheeled away.
1745: We've just received word that they have found what they referred to as a "slow bleeder" from the
inferior mesenteric artery (IMA), which they hope to embolize (plug)
with a coil.
1815: Spoke to the Vascular Interventional Radiologist about how
things went. He embolized a particular branch that comes off of the IMA
which appears to be the cause, but it is impossible to know for certain
yet whether it acted alone or in concert at this point.
1830: Evie comes back to PICU. More updates to follow--the primary effort right now is to help Evie
deal with the side effects of having been under anesthesia -- sore
throat, etc. In the image I have attached, the circled area in yellow is an
approximation of the area where the VIR doctor ran the angiocath to
embolize the offending vessel.
Definition: The inferior mesenteric artery arises from the left side of
the front of the aorta, posterior to the duodenum and about four
centimeters above the bifurcation of the aorta. It is smaller than the
superior mesenteric artery. It descends toward the left iliac fossa,
posterior to the peritoneum, but in front of the aorta and sympathetic
trunk. It gives off the left colic and sigmoid arteries, after which it
continues into the pelvis across the left common iliac artery to the
lower end of the sigmoid colon as the superior rectal artery.
Warning: The final updates for today are very muddled, as I'm drifting toward sleep as I write.
2230: Dialysis complete. Evie and I are
both ready for bed, and hope to enjoy a peaceful night's sleep.
A couple quick thoughts. One leaky arterial branch was embolized.
There were a couple even smaller branches which were suspected of
leakage, but they were left alone because they were too small to be
treated--along with the fact that if you embolize everything, the cure
is worse than the disease as it is somewhat akin to just capping it off.
No blood can flow where it needs to and the associated bodily tissue
just dies off. So one of the comments the VIR doc said was that he'd
rather have to repeat the procedure multiple times fixing more things,
rather than doing too much as it cannot be reversed.
At this point we are in wait and see mode. If this were the singular
issue, we'll quickly run out of errant blood and our hematicrit and
hemoglobin numbers will improve and then even out and stay nice and
steady. We'll see what happens. If the bleeding continues, we'll likely end up having the pediatric
surgeons slice out the section that is the issue. It is unclear how soon
we'd look at enlisting them, and it depends a great deal on how rapid
the blood loss is.
We don't have any good way to know how much of the dye dialysis was able
to remove. Similarly, we don't know how much damage the residue will
do to Evie's kidneys. We know from the kidney perfusion test that it is
very unlikely that they'll be able to bounce back to full working
order--likewise it is difficult to know how much utility they still
could provide, and whether that will be impacted by dye residue.
Last thought: We haven't heard a single theory regarding what caused this bleed in the first place. I guess we may never know. We'll see
what tomorrow brings. Hopefully for Evie, it will include food -- we hit our four week anniversary today (of being hospitalized)... and the poor kid
still
doesn't get to eat.
