Day 14: Post-Op in the ICU

This blog post is copy-and-pasted from our CaringBridge account (https://www.caringbridge.org/visit/thomaslauer) and published in retrospect.

December 1, 2020

Thomas's current status feels like a big step backward, but the team says this step back is necessary to help Thomas take several steps forward.

Thomas is intubated and may well be for "several days," which means back into a fairly deep sedation. He is back on a Fentanyl drip (which he had weaned off entirely) as well as Precedex drip at full dose (which he had almost finished weaning off of). One of our goals is to keep him off of Versed (which he had weaned off of entirely) so he does not have to wean off that class of drugs yet again: benzos aren't fun. When he is able to come off the ventilator again, he will have to go through withdrawals yet again for at least two classes of drugs.

My job as mother has reverted back from entertaining him with reading aloud, talking, and quiet, sedate TV shows, to again being silent and still so as not to rouse him. Each time a doctor enters the room, I am Guard Dog who tells him or her to be quiet and touch as little as possible. Watching Thomas become agitated, scared, and crying tears at my heart, and I don't want him to receive more sedatives PRN than necessary just because someone had to listen to his chest and woke him up.

My precious boy has crusted blood on his facial tape, mouth, and cheeks from Monday afternoon when the gastritis blood kept surging up out of his stomach till it would come out of his nostrils. It is so important not to wake and rouse him that we've left the bits of crusted blood we could not easily get off. My beloved child of God experiences that indignity right now that I get to look at and I get to learn lessons about the value of the soul even when the body is unlovely. 

He now has 11 things sticking into him:

• OG tube
• ventilator tube
• vascular catheter in neck
• femoral line in thigh
• IV in left hand
• arterial line in left hand
• IV in right foot
• abdominal drain
• 3 electrical sticker thingies on his chest

What are they doing to help cure Thomas's gastritis? We are actually weaning him off of octreacide, which was given to him to help but may have harmed. It's a true gamble. This drug is a vasoconstrictor so the goal was to constrict vessels to stop bleeding from the stomach. However, the opinion is that one contributing cause to the worsening gastritis was lack of profusion to the stomach itself (not enough blood flow to the organ). The octreacide may have contributed to that problem. After much discussion, we are weaning off the octreacide slowly and this will either harm or help. During this time, the team wants Thomas to have a protected airway.

The hemostatic spray used during the endoscopy may have very much helped.

Being sedated prevents him from feeling the great pain of gastritis and that in turn has returned his hypertension to normal (he is not currently on BP-reducing medicines!), and THAT is vital because hypertension is yet one more insult to the kidneys, which need to be free of more injuries so that they can "wake up" out of kidney failure. The nephrologist said just today that Thomas has been "so very sick" that we should be ready for his kidneys not to start to wake up for "several weeks" even from now, two weeks post-op.

Thomas also continues to receive transfusions of blood products which is necessary to help his coagulation to stop bleeding. However, no intervention is without risk and blood transfusions each time bring risk of allergic reaction as well as each time add fluid to his system. After we had removed virtually all the 6 liters of fluid via continuous dialysis, now Thomas is back up 2 liters and has fluid on his lungs again that we are trying to get off via dialysis.

How will we know if Thomas's stomach bleeding is slowing? Clearly one cannot trust an NG tube, that's for sure. It was explained to us that, unfortunately, doctors in ICU know that this stomach gastritis can occur during critical illness, but they are essentially "flying blind" (their words) because really the only way to see into the stomach is with an endoscope: an invasive procedure requiring sedation and often intubation. There is no good imaging that can see GI bleeding status and sources of bleeding. So, we watch the gastric tube output: Thomas's is currently an OG tube (going through his mouth) in order to give his nose a break. However, if whatever nurse on duty is not diligently flushing the tube like a German hausfrau, then the blood will not be flowing, we will think everything is okay, and really the blood might be filling his whole stomach. It's an unknown. 

As it is, nothing has come out of the OG tube since Tuesday 4:00 a.m. (12 hours). What it all means, only time will tell!

Another clue is bowel output. The blood should come out the intestinal system. Thomas had 5 bowel movements on Saturday (all blood being digested), which was excellent, but then zero on Sunday and that was before all heck broke loose and he vomited 250 mL frank blood in 2 hours. Bowel movements (black = blood) have resumed today (Monday into Tuesday) and that is seen by the team as a very good sign.

Yet another clue is watching vigilantly for signs of distress. When Thomas's belly becomes subtly distended, he is writhing, grimacing, and arching his back (as best he can while sedated!), and when his BP and heart rate are rising, those are all likely signs of pain from blood accumulating in the stomach.  Right now, Tom is blessedly peaceful.

Taking It Moment by Moment

I feel like my head is spinning. We were meeting with Child Life and Physical Therapy, we were literally two minutes from starting his first NG nutrition, I had requested for Speech Therapy to help Thomas who was mouthing so many sentences to me. And we moved straight from that back to almost what seems like the beginning.

This morning at rounds, the PICU Attending said, "Thomas is going to be a very complex, prolonged case."

The relief at this time is that Thomas does not seem to be suffering. He has been in a peaceful sedation since Monday 11:00 p.m. or so and every hour that goes by without more bleeding and without pain allows us more cautious optimism.

The Home Front

The kiddos at home are doing amazingly well within the circumstances. We introduced back part-time school this week for the benefit of having routine and order. They are enjoying various babysitters. I watch them rising to the occasion, learning how to delay gratitude ("I shouldn't call Mama in the mornings"), and trying to implement Mama's family traditions, such as decorating or buying the birthday gifts upcoming. Certain busy bees have set up the nativity scene, Advent wreath and candles, registered for Holy Heroes Advent Adventures, and created a paper Jesse tree all by themselves. Our family never would have been faith-filled enough to ask for a cross like Thomas's medical problems, but I know that we will experience blessings and greater character and holiness (which we need!) because of it.

We even have an Advent set-up here in the PICU! Thanks to D--- for the electric candles!

Our lovely friend Miss Annaliese from Child Life has come by twice now to play music so quietly to Thomas while sedated. She is trained to play while watching his vital signs monitor the entire time to make sure she is not agitating him.