Day 22: Successful Surgery #7

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Day 22: Surgery Scheduled at 5:00

December 9, 2020, 2:00 p.m., written by Mama

Thomas is scheduled to go into the operating room at 5:00 p.m. today. The goals are as follows:

• Install a J-tube in his small intestine. This will accommodate enteral feeding if transitioning straight to mouth is too big of a step to take all at once. Or maybe he will start taking small amounts orally, but he needs more calories, so would receive those through a continuous feed via the J-tube. Some have asked, so I will pass on what the surgeon explained to me: Thomas's new anatomy cannot accommodate a G-tube or a G-J-tube because his new stomach made of intestine is not a pouch.
• Install a PermaCath in his chest. This excites me because they will remove his double-lumen catheter into his neck. I would share a close-up picture of it but it would give normal people the willies to see something so big stuck straight into one's neck. (Click here for a sanitized illustration, not a photo, of a "vasc cath" with an internal jugular vein insertion. Also, Tom has the "fem cath" with the femoral vein insertion, as shown in the illustration.) This mama loves the idea that when Thomas wakes up in a few days, he will never have known he had that uncomfortable catheter in his neck. Thomas can continue his continuous dialysis via the PermaCath and then transition to intermittent dialysis. The PermaCath will require new care rules for us, as it cannot be submerged.
• Begin closing up his abdominal wound. One's perception changes rapidly in the PICU and at first it was gruesome to look at Thomas's abdominal sealed-up incision running almost the full width of his body. Now that wouldn't faze me--and I understand why surgeons would look at it and say admiringly, "Oh, that looks real nice"--as I've been looking at his gaping wound for five days: While closed with blue abthera (like a sponge), I am only too aware that it is an opening much larger than even my spread-out hand and I know what is beneath. (If curious about this life-altering invention, click here for a nice, sanitized drawn illustration, not a real photo.) There are many options for how they might close Thomas's wound, depending on how much the fascia will stretch and not wanting to create a sudden increased pressure on either the kidneys or lungs. After Thomas comes out of surgery, I will share what plan the surgeons were able to implement.

 

Thomas has had a quiet two nursing shifts since his last surgery and we anticipate another quiet day. He rests and heals inside, his body doing tremendous but silent work. His only trouble is that he has what us laypeople might call a facial "twitch" since Tuesday morning. It mostly goes rhythmically around the clock, only stopping for an hour or two when Thomas is truly, deeply sound asleep (this might be what nurses call being "snowed"). Apparently it is not really a twitch because that has a medical, neurological meaning. Many extra nurses, the PICU attending, Respiratory, Surgery, Nephrology, and probably others have come by for two days and tried to solve the mystery to make it stop. It's not neurological, it's not seizures. We are all concerned that he is under-sedated, but we also keep piling on medications. He is on drips of morphine, ketamine, Precedex, Ativan, and Methadone plus PRNS (doses as needed) of morphine, ketamine, Versed, and thorazine. (I'm the mom who resisted giving Tylenol or Advil!) And my sweet baby uses them all, but twitches on. It is really hard for this Mama to watch because I'm accustomed to rushing over and soothing him when he grimaces: however, if he is becoming overstimulated by us, then I should not do so. (He's on a "no stimulation" order.) So I try to sit back and do my normal routine of administrating the house from afar, organizing rides and babysitters, talking to all the doctors, and reading books plus watching TV . . . but how do I just ignore my boy twitching every few seconds? 

There has been an atmosphere of happiness and hope in the room since yesterday morning. I'm a biased mother, but after three weeks, I cannot deny that Thomas seems to be receiving genuine affection, beyond the training pediatrics staff get to (1) always address the unconscious patient by name, (2) always to tell the unconscious patient what the nurse will be doing, and (3) to use terms of endearment (honey, sweetie, baby), which makes the parents watching feel good. I see how may of the nurses who have had us before come by to visit, hovering in the hall until I see them and wave them in. I know the nurses, various doctors, and his surgeons are logging in from home to check on his status. One doctor who has been off rotation for a week came back just to visit us yesterday. Another doctor back on rotation today told me that when she read from home of Thomas's crises over the weekend, she "fell apart." One nurse whose demeanor reminds me of Mary Poppins (diligent while intentionally cheerful) told me that she allowed herself 3 minutes to cry over Thomas on her drive in and 3 minutes on the drive home, but that the rest of the time she is going to be cheerful for us. I could go on and on about what I think is the special tenderness that Thomas gets from the staff here. Mama and Daddy think he is pretty lovable, too. (And if it is really just good training, then I appreciate the training program here at Levine's!)

Thanks for your prayers this evening when Thomas has his procedures! May Our Lady wrap him in a mantle of protection.

December 9, 2020, 9:40 p.m., written by Mama

Thomas's surgery tonight (his seventh) achieved the goals for which it was intended and for this we give thanks to God.  

Thomas now has his PermaCath and will start using it momentarily for his continuous dialysis.

He now has a J Tube, which the surgeon thought he would not use for at least five days. 

Thomas's abdominal wound was "closed up," which Chris and I are amazed to learn means many different things in the actual surgical world. He and I both struggled to follow our surgeon's explanation, but our best understanding is that the fascia and muscle layers have been sutured shut. The top layer of skin is still open and sealed with a WoundVac. There are various choices about how the outer skin layers will finally be closed up, including going back into OR within some days and suturing it shut or using the WoundVac for a couple of weeks, as that actually results in a completely closed-up wound (the opening gets smaller and smaller till the skin seals shut). I don't yet grasp the pros and cons to each method.

When will Thomas be weaned off sedation and extubated? I've asked this of just about every specialty doc on his case and received various if-then answers based on variables. The truth is that it is swimming in my head and I really don't know if we're talking a couple of days from now or a whole week away.

When will Thomas transition from TPN and Lipids (nutrition in vein) to nutrition in his gut (J tube) and when amidst all of that might they do experiments with nutrition orally? No idea, all the answers I keep getting leave me swimming.

When might Thomas step down from the PICU to the regular oncology floor? The PICU Attending told me some milestones he would need to achieve, but I don't have time estimates on any of them.

Surgery would have to believe that Thomas was very stable and not anticipating any more bleeding events or surgical needs.

Thomas would have to be extubated, but he could still be on supplemental oxygen.

Thomas would have to be weaned off of the heaviest pain medications and done with the withdrawal process. However, he may still be on methadone and Ativan (even at home!).

He would have to be weaned off of continuous dialysis and be on intermittent dialysis (anywhere between 3x weekly to daily). This would require testing him while he is still in PICU in case his body can't yet withstand the volume shocks of doing intermittent dialysis.

Thomas's nursing needs would need to be much less intense because on the regular floor his one nurse would have numerous patients.

What will he do during his time on the oncology floor? I don't have much of an idea. Perhaps he'd be getting his nutrition really stable and starting physical therapy. Then he would likely move to in-patient rehab. Honestly, I don't like transitions and I just wish we could live in PICU until our day of final discharge.

Nutrition stopped by today to give us an overall picture into Thomas's nutritional future. Even though we are thrilled with the good news from Thomas's reconstruction surgery, we are thrilled because Thomas survived. The future of how he will learn to eat, what toll that will take on his body, and how it will affect him culturally is sobering. It is definitely more complicated even than an adult who has had gastric bypass surgery. His reconstructed stomach is not like the small portion of actual stomach that adults have after bypass surgery.

We proceed forward one step at a time, practicing gratitude and contentment, and trusting in Jesus Christ.  My husband reminded me that the first pages of catechism teaches that the reason God made us is to know, love and serve Him in this world and to be with Him in the next.  No matter what Thomas's limitations will be, all the matters is for him to know, love and serve God according to his abilities.