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Day 25: Emergency Surgery Again Now
December 12, 2020, 9:45 p.m., written by Mama
Thomas had some suspicious symptoms today. He was sent for a CT Angiogram this evening. It appears vessels in his bowel are bleeding and it is too much for Interventional Radiology simply to embolize.
Our beloved surgeon is racing in even though he is not on call tonight. He will not abandon our boy.
Thomas will be going into the OR at 10:30 p.m. for his ninth surgery. Our Night Angel who has come for so many emergency overnight babysitting shifts has come to the house and Chris is driving in.
This isn't about me, but at this moment I want to die.
December 13, 2020
We received an update about 30 mins ago that Tom was still in surgery... he is stable and will need another 45 mins or so. So we anticipate him returning or getting an additional update soon.
Day 26: Back from Emergency Surgery
December 13, 2020, 3:45 a.m., written by Mama
Last night, Thomas experienced an unplanned, emergency surgery, #9 total, or his eighth in three weeks.
Thank you for our prayer warriors jumping into action: I can't speak for Chris who was here experiencing the crisis himself, but I prayed through two five-decade rosaries in the clumsy fashion of someone completely tongue tied. I'd forget my words in the middle, stumble every which way, sometimes just have to say "Hail Mary, Hail Mary, Hail Mary" because I couldn't remember the rest, lose my place in the beads till it didn't even matter. I prayed my rosary in that fashion till I fell asleep clutching my wooden cross. (We have learned to sleep during surgery because we need to build up strength for when Thomas returns and the PICU is abuzz with activity for 2-3 hours in the middle of the night.) I felt like Moses collapsing from the fatigue of holding up my hands during the battle between the Israelites and the Amalekites (Exodus 17:8-16), and you were all holding up my arms when there was nothing left in me.
Our dedicated surgeon Dr. B. was not even on call tonight but he rushed to the hospital instead of allowing some other surely competent surgeon to take his patient. While preparations were being made, a staff member whispered to me that Dr. B. is the best surgeon in this whole hospital. We can't know if that is true, but we hear so many good things about him from so many ranks of professionals here, and he seems to live up to everything we hear.
Dr. B. believes he found the source of bleeding as was indicated on the CT scan. If I am repeating this correctly, he found a hematoma (a blood clot, probably caused by a vein) posterior to the duodenum and anterior to the kidney, which he sutured in a figure of eight to ligate it. He put in some Everest, which is a hemostatic agent.
Also there was some GI bleeding located near the site of the J Tube.
He left one surgical pack in (not the four packs he had during an earlier surgery) with plans on Tuesday to remove the pack and sew the fascia and skin layers shut (which would return Thomas to the state he had been in since Friday Dec. 11).
Dr. B. changed out his four drains to nice new clean ones. Nurses love that.
Dr. B. wonders aloud if this could this have been source of bleeding all along. He has thought that it was surprising there was so much bleeding each time. However, one does not just muck around in the abdomen without causing injury pretty easily. Mucking around is to be avoided. Dr. B. said he had been all over the abdomen but had been avoiding that one spot because it was near an artery (the SMA? which supplies all blood for the area?) that needed absolutely no more risk of damage. Yet this bleeding may have been lurking right there. Now I think it is safe to say that Dr. B. has been in every place in his whole abdomen.
How Did this Crisis Arise?
Chris and I felt like this snuck up on us. I was here all day, Chris was here all afternoon till 5:30ish, and we felt so comfortable with Thomas's condition that for the first time he and I both left Thomas in the hospital room for an hour together.
A doctor whom we did not know stopped by and made a comment about how the team was considering surgery and I was so stunned, my equilibrium was completely lost, I felt it was a mistake, I was angry, I cried, and various staff came to smooth things over.
Yet that doctor was right after all, and within only a couple of hours. (It was just a lesson for everyone that the PICU parent who has been here for 25 days and 8 surgeries needs to be handled with kid gloves and very familiar faces at this point. They all know this, it's okay, these things happen, everyone was very kind to me after my breakdown.)
At the start of Saturday day shift, Thomas's hemoglobin had been 15, but the labs during the day showed it dropped abruptly to 8 and then 7. This was such a massive drop that the nurses I was talking to during the day were expressing doubt that the 15 had ever been real. Blood numbers like that can have dilutional problems (too diluted, too concentrated) during times of receiving massive saline fluids, massive blood products, and continuous dialysis pulling off fluid as fast as possible all day. I can only speak for me, not Chris, but I thought that since a drop of two hemoglobin points indicated an emergency bleed once before that rushed Thomas to the OR, then a drop of eight hemoglobin points must be a mistake. Yet, in the background, MDs were watching like hawks.
Also, Thomas's drains kept filling. I am so accustomed to drains coming out of his body filling up hourly with frank red blood that I don't even know what is abnormal. Typically his WoundVac has filled up with hundreds of mLs of blood per day. Tonight he came back from the OR with dry, clear drains: now that's abnormal for Thomas! I asked the PICU Attending what was normal drainage after surgery and he pointed to the clear drains, maybe one had a tiny bit of lighter pink fluid (not even frank red) and said that's what we expect to see. They don't expect to see drains that need hourly emptying (for the last two weeks). Yes, there is coagulopathy, but they were every minute more suspicious of a surgical bleeding hiding someone, eluding everyone. (A surgical bleed means one that can be fixed by surgery, not one caused by surgeons.)
After seven o'clock shift change, the PICU Attending (very familiar to us) approached wanting a CT Angiogram to investigate for bleeds and he gently, patiently answered all my questions. Chris and I were fully in support of a non-invasive picture to give us more information, and at this point it was well worth the risk of contrast on Thomas's kidneys still in complete failure. We did rather wonder why the CT scan was emergent after such an unremarkable day.
It became rapidly clear that it was emergent. As they readied him for CT, Thomas's pain broke through even the drugs that had kept Tom completely "snowed" all day. He was writhing in his bed, mouthing silent screams, and I kept trying to straighten his bent neck but he was using so much strength to fight me that I couldn't. They gave him pain med after pain med PRN until he quieted. When Thomas returned from his one-hour field trip down to CT, I felt his abdomen and with absolutely zero training was horrified and appalled to feel that his stomach was now so taut it was hard like a basketball. (Soon Chris arrived and felt it, too, and visibly jerked his hand back because it was so unnatural a feeling.) Thomas's color went from normal to ashen grey death color right before our eyes.
These kind of experiences lead to PTSD because I can never trust that things are okay, that things aren't going to become a crisis within the next one to two hours. If I think about it too much, a panic attack sets in.
Chris and I feel so shell shocked that we rather apologized to the surgeon for not jumping up and down for joy. (He told us that he expects us to be shell shocked at this point.) I don't even know how to feel hope. The surgeon and team express hope based on evidence that they really have found the ultimate source of bleeding. Where there is life, there is hope, but I can't say I feel the emotion of hope because that is way too scary right now.
Tally of units of blood products Thomas has received, as of 12/13/20 AM: 49 units
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