Day 76: Significant Gastrointestinal Bleeding

Duplicated on our CaringBridge site for permanent record here.

February 1, 2021, written by Mama

76 days in the hospital: 63 in PICU, 13 in the Oncology ward

Finally I had allowed myself to become complacent in hope and today made me wonder if I will ever safely hope again or if I could please just learn to live in peaceful contentment with each moment as God wills it.

Just last night before shift change, the day nurse had told me that I had really fantastic nurse coming on to take care of Thomas, she was one of the best. I thought to myself that I don't really need the best of the best nurses now because Thomas's medical troubles are seemingly done, we're just tying up a few strings (like weaning off narcotics), Thomas was scheduled to accept the one open bed at In-Patient Rehab on Tuesday, and we were told he would be there only two to three weeks. Thomas and I would be home before the month's end. 

But, as I updated yesterday, between 6:30 and 7:00 p.m., Thomas's JP drain switched from straw-colored watery liquid to blood and clots. His hemoglobin dropped from 8.5 to 7 to 6.7 and I was with him at an emergency CT scan until 2:00 a.m. Thank you God for giving me one of the best nurses on the floor to handle a frightening night even when I flippantly thought I didn't need her. (She prayed out loud over Thomas and even washed and folded my load of laundry amidst the busy night!)

Come morning time, Thomas had a brief period of some sweet interaction. He woke up not wanting to eat anything, which was a marked change. He would end up going the entire day refusing to eat anything, and even within the first hour, I knew something was not right.

He did ask to call my dad, his grandpa, for his birthday, so we did and Thomas talked engagingly for ten minutes. That ended up being almost the last talking he did all day.

Thomas on paper looked good. Heart rate, oxygenation, respiratory rate, and blood pressure: all good. Platelets dropped from 500s to 300s (concerning, but still a good number), but they ran his coags and they were "perfect." After his middle-of-the-night transfusion, his hemoglobin rose from 6.7 to 11, which the team took as evidence that he was no longer bleeding (or he would have "bled out" the transfusion, too).

However, Thomas told me he did not want to get in his wheelchair today, did not want to visit with anyone, he sent away his art date with Child Life. He reluctantly participated in OT, which involved sitting on the couch and playing Legos, but was very unhappy and ultimately leaned over and fell asleep in my lap. 

This was the bright spot of my day because I got to remember more relaxed times when it was no big deal to have a little son kick off his shoes and socks and just nap in my lap.

Now it is a milestone to have Thomas nap in my lap.

At Rounds I had already expressed to the team that Thomas's numbers might look good, but Thomas the child did not look good. By mid-day, I was now expressing this to every caregiver who came in the room. I'm not mad at them or upset because it would be ridiculous to think they should rush Thomas off for testing on the only clue that his mother feels "off."

It was 3:30 when Thomas rustled from a nap and I heard him have a large bowel movement. I have avoided talking about his bowel movement and functionality on this blog for his own dignity, but when you've had a major reconstruction of your GI tract, trust me: there is daily discussion, obsession, and tracking of bowel function. 

I rose to help Thomas with his body care, removed his blanket, and saw bright red blood soaking the blankets, chux pad, and his clothing in probably an 18-inch diameter. I called our nurse on the phone, barely choked out the words amidst sobs, hung up, and cried by Thomas's bedside until six to eight nurses whooshed into the room.

Thomas's clothing was removed and it was one of the more disturbing things I've seen in my life. I did not know if I was actually witnessing our son bleed to death, so, obviously, I was crying.

At this point, Thomas began weeping. "I just don't want Mama to cry! I don't want Mama to cry!" All the nurses were so professionally calm with sweet Kindergarten teacher-type voices and I realized that my gift to Tom was going to be to pull it together and hide my tears. I had to do that for him and it wasn't easy.

Surgery showed up soon and the short of it is that we don't know what is going on yet so we have to watch and wait. 

• Thomas had new CBCs drawn while still lying in a pool of blood and the results were back easily within 10 minutes from the lab downstairs. His hemoglobin had actually risen from 11-something to 12-something, and his platelets had risen from the 300s to the 400s. His numbers on paper were even better than before, even in the midst of this acute state.
• Apparently, this is not what an active, arterial GI bleed looks like. The surgeon said that as horrifying as it looked to me, an active GI bleed doesn't stop and looks more like someone took a unit of blood for transfusion, slashed open the bag, and poured it on the bedding. So, no, Thomas's situation didn't look that bad!
• Despite being bright red, this blood might actually be from last night and have needed 21 hours to work its way down and out. Or this might be the beginning of a bigger bleed.
• How could the bleeding from last night in the peritoneal cavity be the same as bleeding obviously in the GI tract? The surgeon said that usually bleeding shows up only in one or the other places, but it is possible to show up in both places if the GI tract has ulcerated through and made a hole. 
• The JP drain finished being bloody yesterday evening and transitioned to darkish bilious green, indicating liver bile. In order to investigate that, the surgeon would want to do a CT scan with enteral contrast dye. (The CT scan last night was with IV contrast dye, which results in a different picture.)
• If this rectal bleeding never returns, then we will consider that it was old blood from yesterday. If it occurs again, then Thomas will go immediately to a CT Angiogram to check for GI tract arterial bleeding.
• I asked and apparently the two CT scans don't show both pieces of information, so the Surgical team is trying to do just one or another since Thomas has already been exposed to so much radiation.
• They really don't want to risk Thomas in surgery again. Even if Thomas had an ulcer on his surgical margins, they still would not want to fix that surgically, but would repeatedly transfuse him while giving his body time to try to heal the ulcer itself.

Chris was in our hospital room within 30 minutes of the bleed. Amazing us all, Thomas actually perked up once that awful stuff was out of his belly. For the first time all day, he talked, he smiled, he listened to stories read by Daddy, and he enjoyed watching TV shows. We spent a sweet evening together: Daddy, Mama, and our boy.

Thomas is NPO again and his J Tube feeds cut off . . . just in case. His CBCs will be run every 6 hours, just like back in our PICU days. I will be sleeping as best I can while checking his JP drain output often and worrying that he could bleed silently or quietly enough while I sleep that I would have no idea. 

This time, Thomas went five weeks without bleeding: none since December 26. His transfer to In-Patient Rehab has been delayed until we figure out and heal whatever is going on. We beg of prayers for Thomas's healing and that Chris and I would learn to be united to God's will in each moment.

I know I have people praying all over the world for Thomas, so I'm going to take my fear and sign off here to go pray a rosary now for some specific people who have shared significant prayer requests with me. It'll take my mind off Thomas's suffering: many people are suffering and we're not the only ones.