Day 44: A Recap of Surgery #12

Duplicated from our CaringBridge site for permanent record here.

December 31, 2020

Day 44: immediate prayers please

Something acute is going on. The doctors have rushed in and Surgeons are on their way to consult. Please pray.

Day 44: God Sent Us a Priest

We are still awaiting CT results but are told that surgery is near certain. Is this the twelfth surgery in 44 days? As we wait, a beloved nurse walked in and offered us a Catholic priest who was here visiting another patient. Do you know how rare and hard it is to get a priest up here? And our personal priest happens to be across country this week? GOD PROVIDES. This priest prayed over Tom and gave him holy words of encouragement. I'm sure all of your prayers helped get this priest to us.

Day 44: Additional drains needed

Update from Dad:

The scan revealed that Tom has some fluid pooling in his abdomen amd behind his lungs and needs three additional drains.  They just wheeled him down.

While we wait for Tom's return, our 12 year old daughter sent us this prayer for the new year that she recently came across.

Prayer for the New Year:                   

Come Holy Spirit, Spirit of the Risen Christ, be with us today and always. Be our Light, our Courage, and our Sanctifier. May this new year be a time of deep spiritual growth for us, a time of welcoming your graces and gifts, a time for forgiving freely and unconditionally, a time for growing in virtue and goodness. Come, Holy Spirit, be with us today and always. Amen.

Day 44: A Recap of Surgery #12

New Year's Eve, Dec. 31, 2020-Jan. 1, 2021, written by Mama

I thought today's focus was going to be getting adequate pain control. Since Thomas's surgery on December 26, we had not perceived he had adequate pain control. In fact, it seemed to be mysteriously becoming more problematic. This is a very challenging area, especially for patients who have been on increases doses of narcotics for weeks or longer because they become tolerant and doses must be increased to be effective. There were many confounding factors going into medication decisions that are too much to repeat here, but it's been a very interesting scientific education for me.

The last three nights (28th, 29th, 30th) had been so challenging with Thomas's wakefulness and pain that I believe I mainly slept in one-hour bursts for only three or four hours each night. As of last night, I was in tears and addressing every single person I could find to say my son is in pain and he needs something to help. Thomas's blood pressure was sky high and his heart rate was mostly in the 160s (too high). Also, for the first time, his oxygen was not 99-100%. We shifted his position, as we do every few hours, and in that moment I watched his sats drop to 94-93-92%. It hung out there and I thought it so strange, I told the nurse that Tom's oxygen had always been 99-100% for our six weeks here. He told me what I would hear again in response to my question at Rounds in the morning: that the oxygen was still within a safe range and we would watch it. I don't repeat that to imply anyone made a mistake, but in retrospect the surgeon says this was a clue of the pleural effusion compressing the lungs.

I was so tired from the days of short sleep, I couldn't stand anymore--I couldn't even sit safely in a chair anymore because I felt I'd fall out--and I was reduced at points during the night to listening to my son cry while I lay on the PICU couch while we waited for the clock to tick to be able to give him more drugs. That final night shift, Thomas had his steady drips of Methadone, Ativan, and Dilaudid (roughly 10x more powerful than Morphine) . . .  he still required 14 doses of PRNs (rescue medications as-needed) for the pain . . . and he still moaned in his fitful sleep.

Come morning time, Chris was calling our head surgeon to see if he could help and I was asking for help from every M.D. I could find. We felt genuinely heard: the staff at all levels was recognizing that the problem needed to be fixed. By the time of morning Rounds, Chris and I felt the doctors had worked out a good plan for the day with all the team members contributing (extra kudos to the Palliative Care team who lent their particular expertise in pain management).

Our beloved surgeon stopped by that morning to investigate the pain. He was the voice who said that maybe this had been inadequate pain control since the last surgery . . . or maybe there was something legitimately causing additional pain than the surgery five days prior. What about that suspected bile duct leak? We had ruled out a leak of bile fluid through the duct system, but what if this bile-liver fluid leaking not out into the drain like it should, but out into Thomas's peritoneal cavity? This type of fluid is caustic and would hurt like the dickens. The surgeon wanted to investigate by having Thomas do a CT scan with swallowed and IV contrast dye. It was scheduled for later and a plan was in motion.

On the higher doses of medications, Thomas had a more settled morning. He wasn't in a good spot yet, but he was improving and we all felt hope.

In the afternoon, Thomas's primary nurse had to take his lunch break and I had to step out of the room for a quarter of an hour, so an Angel Nurse stayed with him (one of the very top experienced nurses on the ward and likely in the hospital). I walked back in 15 minutes later and everything was changing fast. This is why I do not like to leave Thomas ever. Thomas was tachycardic in the 160s and in minutes I watched it climb to the 170s and 180s. Blood pressure was high. His nostrils started flaring, his oxygen sats were dropping. His belly became taut and his feet became cold. 

The team decided to get Thomas to that CT scan immediately because we now needed that information in order to fix what was wrong. After injecting dye and attempting the scan in the first machine, which broke in the midst of it, we had to move to an adjoining room (hauling Thomas's pained body on and off the beds yet again), inject dye yet again (poor kidneys!), and get the scan. 

The CT scan revealed a pocket of fluid behind the liver and fluid behind the lungs (sympathetic effusions--a reaction to the other fluid). It is the fluid gathering behind the lungs that had caused his sats to lower the night before and this afternoon: he couldn't take as full of a breath anymore.

While we waited for the CT scan is when a dear nurse delivered straight to our day a Catholic priest to bless Thomas, as we wrote about earlier. God provides in his own time and place, but he always provides!

Thanks be to God, Thomas did not need to go back in for a full abdominal surgery. Thomas was sent to Interventional Radiology where one doctor put in an abdominal drain and our Dr. B--who drove in again!--put in two pleural drains (chest tubes). Much fluid was released. We will know more about where the abdominal pocket of fluid is originating from after labs come back, but the surgeon bets it is from the necrotic areas of the liver. Some good notes:

• Thomas did not need to be reintubated!
• The CT scan showed that the contrast dye Thomas had put down his NG tube made its way quickly to his urinary bladder, which is one more sign that his plumbing is working and his kidneys are improving so much.
• Also, the contrast dye showed no leaking from the many places sewn together (anastamoses) during his reconstruction.

As the New Year was rung in and the clock struck twelve, we were standing amidst the team settling Thomas back into his bed after his surgery.

Tomorrow we start climbing the mountain again: pain control, rest, draining, and healing. Every moment of the day in PICU is a raw struggle between hope (one of the three virtues by which man relates himself to God!) and intentionally accepting God's will for these ever-changing moments.

January 1, 2021: Veni Creator Spiritus

About 20-minutes prior to midnight last night they wheeled Thomas back into his room and began the usual flurry of activity of getting him reattached to all the pumps and tubes and getting him cleaned and settled.  This flurry all came to a peaceful calm right at midnight leaving us with this quiet and poignant moment.

In addition to the prayer that our daughter sent to us last night in the lead up to midnight, Chris led us in praying the Veni Creator Spiritus over Thomas.  This ancient prayer carries with it a plenary indulgence under the usual conditions, specifically when prayed on January 1st.

A blessed Happy New Year to all of our friends and family.

January 1, 2021: Blessings from Struggling Restaurants

January 1, 2021, written by Dad

Throughout this journey, we have been so blessed by so many people who have showered us with love, prayers, and support.  So many people have brought us casseroles or cookies ... or some who are not able have sent us gift cards to nearby restaurants.  I think we told the story a couple months ago, of how a friend of ours from California purchased a gift card from the Charlotte based Showmars restaurant chain.  The man who answered the phone was the manager or franchise owner (I forget) and when he heard our story, he immediately matched the purchased gift and card enclosed a personal letter pledging his prayers for Thomas.

Well a similar situation played out recently, when we ordered a meal from the local restaurant, The Rusty Onion, our favorite pizza restaurant.  The owners are Jimmy and Maria Margiotis, and when we tried to order a meal from them using a gift card, they gave us our meal, but refused to accept our gift card. 

We share these stories because we are so moved.  We also are humbled when we think about how badly the restaurant industry has been hurt by the government lock downs.  Many restaurants are running at a loss and are really struggling.

If you are reading this from the Charlotte area, next time you are looking for a wonderful prepared meal, please patronize these restaurants as a way of saying thank you for their blessing of generosity.