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Hypertensive Crisis
Written by Dad
Please continue prayers for Tom as after surgery this afternoon his BP has fallen below normal followed by a sustained high BP of 160s/120s. Lights are on bright and room is filling with medical teams.
St Philomena pray for us.
Hypertension stabilizing
Written by Dad
Thank you for your prayers. BP and blood labs are stabilizing.
BP 118/93
Day 25: It Was Likely a Pain Crisis
December 12, 2020, 8:00 a.m., written by Mama
I pray to God that after this medical journey I never again complain about being bored. However, I am that much of a wretched sinner that I know I might not learn my lesson.
My goal is to update CaringBridge only once daily here and even then I worry about others feeling the strain of this emotional roller coaster ride, but then I contrast that with desiring prayers because we think they really work.
On Friday after Thomas came back from the OR, everything seemed fine and he presented as comfortable. After seven o'clock shift change, his blood pressure began rising in a distinct way and BP can be a red flag for pain. By 8:00 p.m., he had reached 145/105. Thomas began writhing his body compulsively (and, remember, he's fighting to make physical movement through a ton of pain and sedation meds that should lay him flat), a behavior he had only done during the acute pain before his major internal bleeding episode. All of us on the team who know him became very concerned and Chris got a rescue babysitter and zoomed to the hospital by 9:00.
So much was changing fast in those two hours, with Thomas's BP reaching the 170s or 130s by 8:30. The five drains were putting out virtually nothing except for two that kept filling up with air: was Thomas's abdomen filling with air from a GI leak or was this a simple equipment malfunction? Thomas's abdomen was becoming taut and distended in front of our eyes.
The room filled with nurses, the PICU Attending, the PICU Resident, and two surgical Residents. They got a stat abdominal x ray, then had the tech come back half an hour later to do a lateral abdominal x ray also. Neither showed anything remarkable.
Meanwhile, Thomas is on drips of morphine, ketamine, and Precedex, which weren't touching the pain. He writhed for more than two hours. Over roughly 8:30 to 9:00, they gave him EIGHT pain doses as needed. I don't even know everything they gave, but I think thorazine, morphine, ketamine, Versed, Fentanyl, some doubled, and finally Dilaudid. (They also added back his methadone drip later that night.) I'm just a lay person who is very shy of pain medications: back at home, our kids will ask for ibuprofen or acetaminophen for some regular childhood pain, and it is not uncommon for me to ask questions about the pain before asking the child to please try to tough it out. After three weeks here, I still feel great fear when Thomas requires so much medication because I don't know how he doesn't die--but the doctors know the max doses possible.
What do they believe happened? The team, led by Surgery, investigated the three really dangerous surgical events that could be occurring. A surgical event means something that can be treated surgically, a medical event means something that can be treated medically. Despite that the whole team was extremely worried, including the PICU Attending who majorly went to bat for Thomas, Surgery felt they could rule out three major surgical risks, and gave us many reasons why. It was pointed out that the surgical repair for those events would be a big deal and not to be undertaken lightly on Thomas's fragile body. Ultimately, the team thinks that Tom fell behind on his pain control, which anyone who has had a major surgery knows is a problem. The key to pain control is "staying ahead" of the pain. Thomas went into OR with his regular drips of pain medication, and there was given heavier medications, and when he came back, the OR pain meds were wearing off. Right around 8:00, the ECMO team resumed his continuous dialysis and the hypothesis is that doing so stripped away the last of the OR pain meds in a rather sudden way. The regular drips Thomas was on seem not to have been enough to cover his pain. Chris and I, in our ignorance, thought that since today's OR visit was comparatively minor--just sewing up his skin--it would be less painful than other visits: however, it was explained to us that doing the final closure causes pressure on the abdomen that Thomas hasn't experienced in nearly a week. There is dangerous pressure and there is regular pressure, and even the regular pressure on all his organs is, apparently, very painful. Thomas needed massive pain medications to get over the hump and ahead of the pain. His blood pressure began to lower and his body quieted: he slept.
Maybe around 11:00 p.m., Chris went home to relieve the babysitter and I couldn't sleep. Thomas still had a somewhat eventful night.
At 1:00 a.m., my still suffering insomnia and after very little sleep the night prior, the head surgeon Dr. B. came by. A surgeon of 30 years' practice is entitled to stay in bed and listen to his Residents over the phone and view the photos they text him, but Dr. B. said he just needed to see Thomas for himself. I hear he came back a second time perhaps around 3:00 a.m., during the three hours of sleep I finally got overnight. Dr. B. is the picture of dedication.
Dr. B. agreed with his Residents that the three biggest surgical concerns were not occurring here. He believes the abdominal distension is well within bounds to represent regular edema after surgery. Still, he didn't trust those drains: Were they creating sufficient suction? First he tried putting Dermabond (glue) around the base of all the drains so no air could escape between skin and drain tube. No change. Second, doing a little trick with surgical zip ties was tried, but resulted in no change. Then some nurses of decades' experience thought to do an old-school trick in which they wrapped the drain tubing in Tegaderm (plastic wrap) in case there were microscopic air holes. Indeed, one drain in particular began putting out significantly more than before, and what is more frank blood with clots.
Now, I'm told that the amount of drainage is not yet cause for concern. We need to be happy that the drains are working because one doesn't want fluid left inside. Thomas has been now putting out 1-1.5 mL per kg weight, and I understand that the doctors won't be highly concerned unless he reached 5 mL per kg, or if the amount significantly increased from one hour to the next.
Thomas did experience rising BP overnight, a couple of times into the 140s over 100s, but he was treated with pain medication and it came right back down, solidifying the theory that he is experiencing pain.
Pain is very hard to watch and important to treat, but we'll take that over a bleeding or leakage crisis requiring surgical intervention. (Yesterday when I told the Oncologist that Thomas would benefit from no more surgeries, he told me that was "the understatement of the year.")
One added note is that Dr. B., head surgeon, has requested Thomas remain intubated through Tuesday (four more days-that-last-forever-to-Mama). The surgical reconstruction of Thomas's esophagus to the created stomach is delicate and Dr. B. does not want any high-pressure oxygen to be used "because Thomas is extremely high risk." (Mama's heart sunk too low for me even to ask questions about that.) Last time Thomas was extubated, he did need to be on high-pressure oxygen, which is normally no big deal, but it is a big no-no with his surgical reconstruction. Therefore, Dr. B. does not want to risk it, even if that means leaving him sedated and intubated that many days longer. (PICU is the department that seems to have the most investment in getting a patient off sedation/ventilator because they have to be concerned with lungs becoming weak/damaged and with the continued effect of drugs.)
We face another day. We pray for Thomas to have peace and rest.
Tally of units of blood products Thomas has received, as of 12/12/20 AM: 41 units
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