Day 98: Unsettling Signs

Duplicated on our CaringBridge site for permanent record here.

February 23, 2021, written by Mama

98 days in the hospital: 63 in PICU, 28 in the Oncology ward, 7 at In-Patient Rehab!

The short of it is that the parents and the team are seeing unsettling signs that would be consistent with Thomas having a pancreatic fistula, something I'm told by Surgery is "a big deal" and would require surgical repair.

But to back up a little bit . . . 

Without any J tube feeding, Thomas had a blissful night, sleeping for 12.5 hours with only two brief wakings unrelated to gastrointestinal distress. At least we have the final piece of incontrovertible evidence that the problem correlates exactly with J tube feeds.

Our little fella woke up happy and hungry, asking immediately for oatmeal. He ate very well at First Breakfast, Second Breakfast, and Morning Snack before no more eating for the day because he felt terrible.

He started the day with one of his regular video calls with siblings. He played Legos in front of the brothers, got a house tour from Daddy (it's just nice to see the ol' homestead), and then watched John feed his fish, a comforting ritual.

He also performed so well at two hours of Physical Therapy. His first goal in Occupational Therapy was to learn how to undress and dress, which I scoffed at as "so beyond possible right now," it was not worth the frustration. However, Thomas showed me yet again how coddling mothers underestimate their children: he took off his pants completely and put them back on, then took off his shirt completely and put it back on . . . all in only about two minutes. We can check off the box on that accomplishment!

In the game on the mat below, Thomas would roll to one side to receive a "ball" from the therapist, then roll to the other side to attach via Velcro the ball to the appropriate playing field. (He doesn't ever go into a prone position because of his surgical repairs and drain.)

But right at ten in the morning, everything became difficult and Thomas spent much of the next four hours lying in bed, crying in pain. 

I have never conceived that a surgical drain could be particularly important, but this is a "CRITICAL surgical drain" and one which has been discussed and managed minutely by The Top Surgeon for two months now. He goes home and thinks about it, ponders it, makes consultation with other surgeons, and logs in from home to monitor the drain output and lab data often.

Meanwhile, I ignorantly wonder what the big deal is, it's just a drain.

In retrospect, we know that the drain tubing exited the body to 3.5 cm at least as of the weekend because my husband saw it, but it did not come to my attention till I noticed it this morning. Just because of the sheer hours I've been here and how I've seen Dr. B---- guards this drain ferociously, I took one look at the drain and called for help, delivering the basic message, I don't know why this drain matters so much, but it has come out 3.5 cm and I'm telling you that you need to call Dr. B---- right now. Surgery was here within 30 minutes.

Over the weekend, the drain output increased significantly (having held steady at about 50 cc per day, and then jumped and held steady at 80s to 90s per day) . . . but, once again, because there are no traditional Rounds in Rehab, I was left unaware of this data or I would have known it held significance.

Then yesterday the drain had bloody output and today began leaking (minimally) out of the stoma. 

Surgery had to remove the Hollister device, which was not tight enough to hold the drain in place, add in two deep stitches--which caused unflappable Thomas to scream at length, even with EMLA cream--and then put on a new Hollister device much tighter.

The output in the drain is high in lipase and amylase, meaning it is material produced by the pancreas that should be going through a duct to the GI system but is not. Meanwhile, the test results from a week ago finally came back today: there is very low lipase and amylase in Thomas's stool, which means the enzymes produced by his pancreas are not making it through his GI system, nor helping him digest, and are not exiting with the stool.

In the immediate term: Thomas will resume his J tube feedings tonight with the pancreatic enzymes he requires added back in.

Unfortunately, all this data is consistent with a pancreatic fistula, which we parents still do not understand deeply, but the surgical nurse explained would be "a big deal."

Most of my female readers may have heard of an obstetrical fistula, but there are many types of fistula and you can read the definitions here: https://medlineplus.gov/ency/article/002365.htm

One lesson I did learn during all my time in PICU and with Thomas's pancreas in frank failure for so long: There is a saying among Surgical Residents: Do such and such (I forget), don't go home until your Supervisor says so . . . and don't ever mess with the pancreas. Except the word they use is a whole lot stronger than "mess." The pancreas is incredibly delicate and temperamental and surgeons hate getting anywhere near it.

Right now, Dr. B---- wants a day or two of watching the drain output because different levels mean different things. We are to watch for worsening clinical signs, such as nausea (check), emesis (check), belly pain (check), and fever (nope). 

Likely in Thomas's future (this week?) is a fistulogram, a form of scan using oral contrast completed by Interventional Radiology. When and how will the drain be removed? There are so many branches in that decision tree, I won't even try to explain them all. However, if there is a fistula, I'm told that it must be surgically repaired, but I have no details on the type of incision, how easy it is to access the pancreas, what we can expect . . . except that "it's a big deal."

Specific Prayer Request: The surgical team is being very cautious because the benefit of surgery to Thomas must be high before anyone will undergo the risks. I am reading medical articles on the surgical treatment of pancreatic fistulas and found this possibility, which is now our family prayer request: "The management is initially conservative, as spontaneous closure can be expected in the majority of cases, especially in low-output fistulas." (Source)

Thomas's planned discharge date, which I've been keeping close to my chest, was March 2, a mere single week away today, so close I felt like jumping out of my skin. I'm now watching that reality slip through my fingers, as confirmed by the staff here today. I have not shared just how many things I've been preparing and planning about going home, how much Thomas talks about the specific things he wants to do at home, or how much psychologically I need to get home. This potential problem and a possible surgery looming is driving me back to the raw prayer of "Jesus, I trust in you," which was all I could force myself to say for a long time.

Jesus, I trust in you.