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December 4, 2020, 1:15 a.m., written by Mama
Please pray for Thomas who is going into emergency surgery right now. Thank you, Jesus, that his original head surgeon "just so happened" to be in the hospital at 1:00 a.m. checking on another patient, so Thomas will be with him and moving very fast.
Thomas is bleeding internally. There are many signs, including his hemoglobin dropping 2 points in very rapid order.
Chris is finding an emergency babysitter and will be joining me for the wait.
December 4, 2020, written by Mama
Thomas survived surgery and returned to the room around 4:30 a.m. We will provide details later.
December 4, 2020, written by Mama
Thank you for your emergency prayers.
The briefest update is that Thomas began bleeding out internally during Thursday evening. He went into emergency surgery during which the surgeon removed 80-90% of his stomach, 80-90% of his pancreas, and his spleen because they were all dead already. Thomas's entire abdominal incision from one side to the other had to be re-opened (because it was a running stitch) and he has been left open, his wound sealed temporarily with a Wound Vac. It is planned at this point, God willing, that Thomas will go back into surgery on Sunday to remove his gallbladder, which they did not do last night because his body could not withstand more surgery. His esophagus will need to be re-routed because it is not currently connected to his intestines. If all goes well, he will get sealed up on Sunday and we have no foresight at all after that.
I will provide the longer story of what led up to the emergency surgery.
Around 9:30, Thomas become hypotensive. At first the team thought that they had simply drawn off too much fluid with the dialysis. Thomas was very close to having all the fluid pulled off, so maybe they pulled off to much, as sometimes happens. They treated the situation by giving fluid boluses, hydrocortisone, and albumin. For raising BP rapidly, they do not use IVs but use giant syringes of saline and push it manually right into various access points.
Around 11:30 p.m. they had been working for two hours and were not having success raising Thomas's blood pressure. Within the next hour, Thomas's OG tube started flowing again slowly and his abdominal drain, which had doubled in output the day prior, began to nearly triple in output and the fluid in each was changing color from old, black blood to redder and redder. You can envision that adding frank red blood to black causes a very subtle color change, but the nurses spotted it right away.
At some point in there, the Resident had joined the nurses in their efforts and she never departed, which I began to realize was odd: Was it a very slow night in PICU? Why was she still here when they normally stay no longer than a few minutes? At one point, I fell asleep on the couch for a few minutes and the Resident actually woke me up and I realized in a flash that never before has anyone here broken the policy to let sleeping PICU parents keep sleeping. Thomas's hemoglobin had dropped from 9.6 to 7.4 in just a couple of hours, which was the final positive sign that this was fresh bleeding and serious at that. His stomach girth had grown in size 2 cm in just a couple of hours. By the end of the next frenetic hour, I watched Thomas's belly swell almost like he was pregnant: he was full of blood.
I was told that Surgery was going to order imaging and that our head surgeon just so happened to have driven in from home to check on a patient of his at 1:00 a.m.--Thank you, Holy Ghost!--so he was going to walk over to see Thomas.
I had been keeping Chris updated at home, but at 1:15 a.m. is when he and I decided that he needed to find emergency overnight babysitting and to join me. (Thank you so much to Mr. R--- for coming to our aid!)
At this point, a good 10 people had been working on Thomas for two hours. While waiting for surgery, they starting giving Thomas transfusions. This child has had transfusions, sometimes multiple times per day daily for most of our PICU stay. My blood ran cold to watch that these transfusions were not given via the IV but were put into those giant plastic syringes and pushed manually into every access point the nurses could find. An IV would never be fast enough to compete with Thomas bleeding out.
Our surgeon walked in and explained that there would be no imaging because there was no time. I consented to the surgery while Chris was rushing in.
If memory serves, it was between 1:15 and 2:15 a.m. that the team got Thomas ready for surgery. For that hour, more than 15 people were crammed in this room preparing his body and more crowded in the hallway. The primary nurse was incredibly calm, cool, and collected, handing out orders to all those helpers. They ordered extra of every single medicine he is on up from Pharmacy and loaded his IV pole with all those containers so it was not possible for him to run out while he was in the OR. The entire time they were pushing syringe after syringe of transfusions.
I can't even remember everything they needed to do to prepare his body while the OR was being set up. I do know that I was praying my rosary in the corner and minute by minute, I lost all the words and finally I decided that Our Lady would still care for Thomas if all I could manage to say on every bead was "Hail Mary, full of grace" (and ending there!) because those were truly the only words I could still hold in my brain.
The nurses were on all of Thomas's limbs adding extra access lines when the Anesthesiologist showed up around 2:15 and said, "Stop! We don't have time for you to do that! We will take care of it in the OR!"
And they wheeled Thomas's bed away, with someone pushing his IV pole and its 10 or so medication pumps, and someone else pushing his ventilator, and someone else carrying his blood from the blood bank, and someone else confirming orders orally that he possessed Thomas's "code sheets" (medication doses in case he flatlines) and that he had all the medications to resuscitate him if Thomas died while traveling to the OR.
I sat in the empty PICU room for a few short minutes before Chris arrived and I slept hard for two hours, having not slept the night before.
They returned our precious boy at 4:30 a.m., having had something like nine units of blood transfused, and with what is now called a "life-altering diagnosis."
If all goes the best, he will remain heavily sedated for three days until Sunday when they do more surgery. Concerns to be vigilant for is the SIRS response--the same trauma response that caused him to retain 6 liters of fluid after his first surgery--and bowel death.
Thomas is not out of the woods and he is in some danger of death. After the hospital refusing to allow in our priest for two weeks, today they said it was "no problem" and they are welcoming him here. I am told that the Palliative Care team is going to introduce themselves to us and, after I burst into weeping tears, the Resident telling me clarified that Palliative Care is not just for patients who are dying, but is also for those with a life-altering diagnosis and for managing all the interactions among the many pain killers and sedatives he will be on for a long time. The children's godmother is driving up immediately to remain for the weekend. Someone is sending us dinner tonight.
We are told that in the best circumstances Thomas will be in PICU "for months."
My eyes and head hurt from crying and I hope God accepts those as prayers when I can't breathe to form words.
December 4, 2020 (birthday of our firstborn), written by Mama
Invitation: For our local well-wishers, we would be so grateful for you to come to a special Mass our parish priest is saying for Thomas on Saturday Dec. 5 at 9:00 a.m. As always, non-Catholics are welcome and encouraged to attend a Catholic Mass.
"We wanted to announce that Fr. Reid is generously offering a special 9am Mass tomorrow, Saturday December 5, for Thomas Lauer’s miraculous healing. Sadly, Thomas required emergency surgery overnight and his situation is very grave at this hour. We invite everyone to attend and pray for a miracle, if God wills it. This also is a special blessing as it is First Saturday as well and Father will be offering a votive Mass to the Immaculate Heart of Mary. "
Location: St. Ann Catholic Church, 3635 Park Road, Charlotte, NC 28209
Today has drained us to our cores. This morning as I called various people, I cried for hours till I couldn't bear to cry more. So many of you have reached out to me and to Chris, and I know you'll understand if it takes me some days to get back to you.
After two weeks of the hospital steadfastly refusing to allow our parish priest inside to bless Thomas, due to COVID restrictions, today I asked and was told immediately, "That will be no problem. Let me put his name on the list." Of course, a parent has mixed emotions about that message. In a similar vein, the social worker visited and the Palliative Care team visited. Don't envy the wet-behind-the-ears Resident who was assigned to come privately to tell a grieving mother that Palliative Care was coming to talk to me and who had to deal with me falling apart.
Our Oncologist visited and informed us that Thomas is all done receiving care for neuroblastoma. "Now we hope and we pray that his chemotherapy was enough for it not to relapse." His body won't be strong enough again for the planned consolidation chemotherapy rounds.
The Intensivist Attending pulled up a chair and talked to Chris and I for at least 20 minutes about how we're going to get through this "marathon of months in PICU" if we are so blessed by God's mercy that Thomas survives. He gave us many practical prescriptions involving sleeping so we don't become delirious, eating, stepping out of the room, making this room as personalized as possible, and so forth, plus he told us that we will experience PTSD in the future.
In the afternoon after Chris headed back home, I began to experience a panic attack in the room so for the first time in 17 days, I willingly left Thomas with the nurses. I fled to the hospital chapel where I found I was and am too weak to pray right now. I just wept my heart out in front of the altar and begged God to accept my tears since I couldn't form words. Just in that moment, a dear friend texted me a YouTube video of a Scriptural sorrowful rosary, so I lay down in the chapel because I thought I was going to vomit and faint and I clutched my purple St. Therese rosary and just listened. Our God is a tender father and surely he takes whatever I can give him.
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