Day 48: Delirium

 Duplicated from our CaringBridge site for permanent record here.

January 4, 2021, written by Mama

Sunday Night Worries

We hope Sunday night was an acute episode averted. It was 6:00 p.m. when I was sitting next to Thomas and noticed signs changing quickly: He started crying and his heart rate (up in 130s and 140s) and blood pressure (peaked around 140/90) rose significantly from the beautiful numbers they had been for days. As I sat next to him soothing him, I noticed new shadowing (bruising) around his J tube, which can indicate bleeding. I told the nurse immediately that I did not want to be alarmist, but Thomas has showed those signs before bleeding or abdominal leaking in the past. That's when the nurse showed me that just within the last hour, the output from one drain had started to change color from straw to red-tinged. With that combination of signs in Thomas specifically, that was enough to contact Surgery and start running blood labs.

By 8:00 p.m., the first labs back showed hemoglobin down, platelets down, INR (time to clot) increasing. His hands and feet were cool, and his blood return when they squeezed fingers and toes was slow. Three units of blood were ordered.

We then pulled back the blanket and I noted, "His belly is wider." The nurses and doctors agreed and called for an X ray.

The drain output became redder.

I was scared that this was another acute episode starting yet again. Of all nights, the Residents who had been here for a month were leaving and the new Residents had arrived not two hours prior, walking in to meet Thomas for the first time while he might have been heading into a dreadful state again. We were so scared.

Thanks be to God, the three blood products seemed to fix the coags (improve his ability to coagulate blood), so whatever had started "oozing" (an actual medical term that seems to mean something specific around here) inside his abdomen came to a stop.

Around 2:00 a.m., the drain output began lightening and it was back to beautiful straw color by 5:00 a.m.--also the time I noticed his HR and BP dropped back to normal.

It was a rough night of concern and I didn't get much sleep.

A Little Bit of Delirium

After Thomas's wonderful communication the day prior, I had hoped for more of the same. Indeed, when I woke at 5:00 and the nurses were weighing him, they peeled back his blanket and he spoke up, "I need a blanket!" However, I quickly discovered that Thomas was experiencing some ICU delirium. At one point, he started crying, telling me, "I can't see you!" so I asked the nurse what was going on. The nurse asked him if he knew where he was and he answered no. She said he was in the hospital and he was safe. Then she asked if he knew who I was. He answered, "I don't know! I don't know! I don't know!" 

After living in this hospital with him for 49 days through so many hard times, it had never occurred to me that the delirium I kept being forewarned about would mean he wouldn't know me. This was a new pain to my maternal heart and an ongoing meditation on how purest mother's love would be unidirectional in the most extreme circumstances, say of a profoundly disabled child from birth who does not "know" his parents.

In another instance, the nurse asked again if he knew who I was and he answered no. She told him I was mama and then asked again, but he persisted, "I forget. I forget." He also asked me--the friendly, anonymous face--"What day is it?" I answered, "Monday."

My heart was hurting, but two experienced nurses reassured me that Thomas still innately knows who I am because I am a comfort to him. His brain just cannot connect the concept of Mama and the person in front of him right now. Also, it was explained to me that one of the clues that what we are seeing is delirium is that it comes and goes. I had thought that since Thomas had not previously shown almost any delirium, that he was not going to experience it at all--we dodged that bullet, is what I thought.

Despite my bit of sorrow, I noted all day that Thomas continued his preference always to fall asleep holding my hand. Once even he caught me trying to sneak away too soon and told me, "Stay!" He may not be sure who I am, but he still knows I love him and keep him safe.

At one point, Thomas also asked me, "Where is Dee-Dee?" referring to three-year-old David, his best playmate at home. I told him David was at home, which caused Thomas to burst into tears and begin lamenting, "I want to go home!" repeatedly. I comforted him, told him how he would become strong and healthy and then we would go home to play with David and all his brothers and sisters. Still, these words fell on a lonely heart.

Medical Updates

Thomas's NG tube was removed as it was unnecessary and uncomfortable. Yay!

Thomas went to Interventional Radiology to have a second chest tube placed on his right side (so 2 on right, 1 on left): In the first three hours of installation, it output 360 mL! Imagine 1.5 cups of fluid compressing just one of a five-year-old's lungs!

They also did another TPA procedure on his left chest tube, which has been slowing down.

While down at I.R., the Surgical team popped in and removed Thomas's PermaCath! I thought he'd be coming home with this dangling contraption from his chest and we'd be going to intermittent dialysis three times weekly for months. One medical professional today asked us if we really understood the near miracle of Thomas's kidneys recovering from this level of trauma and that this isn't how it might have or usually would play out.

Source: http://virclinic.com/permcath-or-tunneled-catheter-insertion/

Back at Home

The children started back to homeschooling after PICU and Christmas break. After our homeschool skidding to a halt, I'm working with our new nanny on a great plan and I am so excited to see how she is embracing getting our school launched again. We are attempting daily music practice and about 50% level of school to start.