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.
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.
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.
