Day 28: Surgical Results

Copied and back-posted from our CaringBridge site for permanent record here.

December 15, 2020, written by Mama

Thomas had a successful planned surgery on Tuesday morning, his 9th surgery this month. Dr. B. says in his quiet tone of voice (everyone who knows him personally knows what I mean) that he is "cautiously optimistic," which is about the strongest phrase a sober surgeon--and one who has operated nine times on one kid--is going to use. 

For the first time, when Dr. B. went into the abdominal cavity and removed the surgical packs, there was no blood present. No internal bleeding has been occurring for about 48 hours--also a first.

Dr. B. closed the fascia and skin layers, this time with sutures and staples (alternating?): if infection occurs, it is easy to remove a suture or two to allow drainage. It is planned for the staples to be removed in 10-14 days, longer than normal because Thomas is compromised in wound healing.

There is no WoundVac/SkinVac being used this time. Dr. B. had suspected that the output from the SkinVac these last 48 hours was from the muscle and skin layer, not from internal sources, and going in this time confirmed that suspicion. Using a SkinVac can actually cause skin bleeding to continue because of the fairly strong negative pressure, so by not using it this time, probably that will help. Also, the apposition of tissue helps stop bleeding.

Dr. B. added 1 more drain, for a total of 4. He will leave the drains in place until after trickle feeds are started (no sooner than 3 days from now) in order to watch for any feeding complications.

Next Steps: Weaning and Extubation

When all the Attendings on the team think Thomas is stable enough, weaning sedation will begin. I've noticed a general rule of thumb around here is that when a surgery has occurred, we don't make other changes that day.

Maybe by tonight, they will begin breathing trials again. Thomas has always proven his strong lungs during breathing trials. These trials are used not only to test lung function, but to strengthen lung function, like a workout. Maybe one or two days following (Wednesday-Thursday), the weaning of sedation will begin.

When Palliative Care was added to Thomas's group of specialists--the day after his devastating emergency surgery in which he lost four necrotic organs--I was not a happy mother because Palliative Care is most known for helping people with terminal illnesses transition peacefully to death. They have continued to visit me often and I admit to keeping up a pretty big emotional wall--which I would imagine they spot a mile off and understand why. 

Well, now is come a time that I am embracing Palliative Care for one of their areas of expertise: drugs! They are very good at helping manage pain and sedation (because of helping people in the agonizingly painful final weeks and months before death), especially understanding intimately all the interactions and the long-term side effects--and they are very good at weaning off of those medications. 

When Palliative Care visited me today post-op, I asked to go over Thomas's list of pain and sedation drugs and talk about what is to come. Thomas is likely to experience neuropathic pain (visceral hyperalgesia) because he has had extensive surgery in abdominal organs. His nerves will be very irritated. Neuropathic pain takes longer to resolve because visceral nerves are different, not so localized, and more like a net that causes diffuse pain.

Opioids wean to Methadone: Thomas will probably be on Methadone for months once discharged home and we will be carefully guided how to step down from it.

• Morphine--currently the primary source of Thomas's pain control
• Dilaudid
• Fentanyl--Note that we weaned off Fentanyl (an opioid 50-100x more powerful than morphine) and have stayed off it, so we don't have to deal with weaning that.

Benzodiazapines wean to Ativan--Thomas will probably be on Ativan for months once discharged home and we will be carefully guided how to step down from it. He probably won't be on this as long as methadone because we have kept him off a benzodiazapine drip for nearly 3 weeks now.

• Valium--Being used as a muscle relaxant for Thomas's stiff neck. Weans to Ativan.
• Versed (PRN, not drip)--Can lower Blood Pressure. Weans to Ativan.

Precedex--He can remain on Precedex while being extubated. This can be weaned slowly over a long time or, if Thomas is on enterel feeds then, he can wean to clonidine.

Ketamine--Makes sounds and lights very overwhelming in an ICU patient. (Used recreationally for disassociative effect and visual and auditory hallucinations.) Can boost Blood Pressure. Can help reset pain receptors.

Thorazine--Very effective for ICU delirium. Not a weaning problem

How Long Will Thomas Be in the Hospital?

All the specialty teams have different investment and not one of them wants to give an estimate, but Dr. B. thinks it is "very optimistic that we would go home from the hospital even in one month" . . . which is a complicated way to say he thinks we will be in the hospital system--PICU, Oncology floor, and Rehab floor--longer than an additional month.

We gave an update over the phone to the children and, while Mama and Daddy knew this long ago definitively, we explained to them that there was no possible way Thomas would be home from the hospital by Christmas. We need to start brainstorming various ways that Christmas might play out for our family. We need to have numerous contingency plans because how we celebrate Christmas will differ whether Thomas is heavily sedated like now, or going through withdrawals, or done with withdrawals but wide awake.

Chris reminded the children to keep in mind that even if our family is separated and not physically united this Christmas, this will be our best Christmas ever because we came so close to losing Thomas forever, but my being stationed in the hospital with him means he is alive and we have him. Daddy reminded the children that they need to start thinking about this Christmas as a way to sacrifice and to give for Thomas's sake instead of focusing on the losses of some of our permanent, tried-and-true traditions we would "never" do differently.