Duplicated from our CaringBridge site for permanent record here.
December 30 2020, written by Mama
Pain Control
Earlier in the day I thought we had started to achieve good pain control, but I write this after spending two hours straight soothing Thomas while he cried and we used up every PRN he has and had to wait till next doses were available, as well as increased his drip. It remains today that if Thomas is awake, he is crying in pain. At Rounds we will discuss pain control again, as we have twice daily for several days.
The Bile Leak that Wasn't
Overnight, the output from Thomas's surgical drain turned dark greenish-black again and Surgery considered it to be bile. Thus, we went on a hunt for a bile leak, something Thomas is at risk of because of his GI reconstruction, and most specifically his bile duct reconstruction. He could be leaking bile from any one of the many places he is sewn together. They ran blood labs comparing his serum bilirubin to the bilirubin in his drain and neither number indicated a bile leak.
While we waited for the labs, Thomas was sent down to Nuclear Medicine to have an Upper GI Study done. The one-hour scan needed to be repeated for a second hour. My little fella snoozed through it all thanks to good medication and I sat next to him inside the giant, room-sized machine reading a book.
It was poignant for me to be back in Nuke Med because we have been there at least four times for MIBG scans, always seen the same staff who have enjoyed Thomas as a bouncing, energetic, talkative boy climbing furniture. Never have they seen him in his current condition, nor did they even know he has been living in ICU for 43 days.
The scan results show there is no active leaking of bile! Praise God!
Intermittent Dialysis . . . Delayed!
It was going to be a triumphant day that Thomas transitioned from continuous dialysis to intermittent dialysis. However, his numbers today were so good that they did not even give him intermittent dialysis! With one dose of Lasix on Tuesday evening and then on his own body's power all Wednesday, Thomas voided roughly 1,100 mL urine over 24 hours! They are watching his labs--creatinine, BUN, potassium, magnesium--twice daily at least to know when Thomas needs dialysis help to clean up his blood.
He is doing so well that they decided to try giving him Lasix twice daily instead of dialysis and just see day by day how he does. The Nephrologist says that Thomas's kidneys will probably be healing for about three months and then we can see "where they settle out," how much function he will have, which probably will not be full function but will probably be good enough.
It's hard to imagine he won't need any dialysis in the future, but it is very exciting that he did not need it the first day.
Not Today, COVID, Not Today
It was decided to swab Thomas for COVID last night even though he had no symptoms. All of Chris's (and John's) tests have remained negative, so I was told that the reason for the test was that the longer a kid is on the unit, the more likely he could catch COVID from somebody here. As I expected, Thomas's PCR test has returned negative. (You get PCR tests returned way quicker in a hospital than out at a clinic.)
Generosity Appreciated
So many people do loving things for our family during this trial, and there have been some very generous souls who have done for those around us! Almost a month ago, two families joined together and catered dinner for the entire PICU night shift here and breakfast for the day shift. Today a third family catered breakfast for the PICU staff. You are all so generous and thoughtful, and it is much appreciated not only by our family but by all the staff here, who come by our room to give their thanks.
No comments:
Post a Comment