January 7, 2021, written by Mama
Tonight my heart is very tender because of the loss of a little friend connected to our lives here in PICU. I will be very sparing with details (to the point of some sterility) to avoid exposing someone's private life. On the day of Thomas's primary surgery, another little patient close to his age was also here in the wee hours of the morning preparing for surgery. That little person befriended our Thomas and their friendly engagement was the last child each of them would play with during this PICU stay. That child ended up experiencing complications, as did our son, so they remained here for 51 days to date. I would run into the other patient's guardian about three times per week in the hallways and, as we are both deeply believing Christians, we would encourage and support each other, and, lately, increasingly cry together. Today that other little soul departed from its body and the guardian sent word via a staff member to want to tell me in my room across the ward nearly immediately. I was grief-stricken and wept at length, and later was afforded the privilege of parent-to-parent hugging and crying together. Please spare a prayer for that family tonight to experience consolation in the weeks to come. I pray the little child is in the beatific vision of God even tonight.
Medical Updates
Last night was the third in a row of very challenging sleep. Because Thomas now shares a nurse with another patient, each of the last three nights, the other patient got his or her cluster care first. Thomas's cares are at 8, 11, 2, and 5 (AM and PM). Each night, he had his body cares and nighttime bath at 11:00 p.m., which means Mama is staying up exceedingly late waiting for them to be concluded. Last night, Thomas was ready to go to bed by 11:15, but it took him an hour for me to soothe him to sleep, despite four steady drugs plus two PRNs given at the time. At 12:15, I was able to go to sleep and over the next four hours, he woke twice and it took me 20 and 40 minutes respectively to soothe him back to sleep. At one of those wakings, one of the pump alarms was blaring, but my nurse was helping her other patient. I went walking the halls three times looking for help and it was strangely a ghost town in PICU! I pressed all the Nurse Call buttons (which I never needed when I had my own private nurses--ha ha) with no result. Finally I walked to the far end of the ward and found one nurse who came to silence the alarm. I asked her why the Nurse Call buttons were not working and it turns out that the buttons on the bed are not hooked up to anything. She said I needed to use the Call button on the remote control device, but then even she had to search high and low for it because it was tucked away hidden on the wall of equipment. Finally, Thomas woke at 4:15 a.m. and it took me an entire hour to get him back down. It was 5:15 and I knew the surgeons would show up for the first visit (they are always first) at 6:00. I thought I might just pass out from fatigue, so I wrote a note and left it on the bed requesting everyone be silent and not wake up Thomas with their examinations, nor wake up me, because I was so short on sleep. I commend the various doctors who came in for being ninjas: I ended up sleeping through till 7:45, which is unheard of in my real life or PICU life!
Thomas continues to go through his withdrawals today, scoring on the WATTS scale up to a 5 (when they want to keep it 3 or lower). We made no reductions in medications today because Thomas would be traveling for a CT scan, but he still struggled. He also talked very little because of feeling puny. We will save more reductions for tomorrow.
Thomas lost his left chest tube as the daily X ray revealed it had pulled out of the pleural cavity and was simply subcutaneous. It does no good there, so they removed it and will watch for fluid filling up the cavity, in which case he would need a new chest tube.
Thomas has had a fever for about 48 hours now, so we went traveling through the hospital today so Thomas could have a CT scan checking his pleural effusions in greater detail and checking his whole GI tract and peritoneal cavity for any abscessed fluid pockets. The results are that they did not see any evidence of infected fluid, but did see two (I think) "loculated fluid pockets." The pleural effusion on the left has not refilled, so we can monitor with daily X rays, and the effusion on the right is still there, although improved from its worse, and we can continue to let those two chest tubes drain. It is the opinion of the team that Thomas's fever is caused by an inflammatory immune response and we will simply treat for comfort.
Tomorrow's goals: wean more meds, do physical therapy, do speech therapy.
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