Update on my son: home from hospital

[LMV]

I'm glad your son is home and on the path to healing.  I guess I missed where you shared about the surgery originally so I'm probably missing a lot.  From what I can glean from your posts (and your responses to others), I'm guessing that your son had a pilonidal cyst resected and he has a very deep wound as a result.  I don't get the impression from what you are describing of the home wound care you are doing that there is wound vacuum in place so that may be something to discuss with the surgeons.  Obviously I only have the most superficial surface information and there may be very valid reasons why a wound vacc wouldn't be a good option for your son but from what you are describing it actually sounds like it might so that may be something to bring up if you haven't already. 

 

 

 

Yes, I can tell you exactly what the plastic surgeon told us after the surgery.  He has never seen a case like this in which the patient did not have 3-4 more surgeries during that year due to infections in the wound area (inside the body, I presume).  He said to expect it because it is going to happen.  Well, I hope not.  Meanwhile, my son is scared to death of going through this again several times ... he is really traumatized by what the surgeon told him.  Plus, the surgeon didn't tell him that until five minutes before my son was wheeled to the OR. 

 

Now my son has major anxiety about germs because he is sure that if I am not *extra, extra* careful, he will get an infection.  During his sponge bath today, he would not let me use water from one of the sinks because he is convinced something is wrong with it.  He turned on that faucet a few weeks ago and the water didn't taste right.  So I used the extra sink, and then went over his skin with witch hazel, telling him that would take away any errant germs.  Now I'm going to have the water tested to make sure our well hasn't been contaminated, and to set his mind at ease.

 

The general surgeon (who actually removed the cyst I found out today) said 6-9 months and did not mention more surgeries.  He was the one we talked to while my son was in the hospital because the plastic surgeon "never visits patients in the hospital" according to the nurses.  HIs twit of a physician's assistant came once. 

 

The general surgeon said that the minute my son is healed, we must get laser hair removal in that area to kill all the follicles in hopes that the cyst won't recur.  He said there have been no studies done on this, so the insurance companies won't cover it. It is known that these cysts get started from hairs that grow into the body, so no follicles means no hairs growing in the wrong direction.  He thinks that will work, and we are going to try it if we can come up with the $1-$2K it costs.

 

My son has 49 staples and about 20 stitches and a glued incision that is about 5" long. The cyst was so big that after they removed it, they had to take some muscle from somewhere else (I assume gluteous maximus) to fill in the space.  I'll say this -- his wound doesn't look like a plastic surgeon had anything to do with it.  But this was also reconstructive surgery, so let's hope the inside looks better!

 

And that is the sum total of what I know. If I get some time during the day, I'm going to call the hospital for a copy of the medical records.  Hopefully that will shed more light on the situation.  I tried to get an appointment with the general surgeon, who is a great guy, but he said Stephen has to see the plastic surgeon first.  There is some protocol there but he didn't go into details.

 

I didn't even know the general surgeon was involved in this, and neither did his office staff either before surgery or today when I called.  I was told by the staff when I called with pre-surgery questions that he merely referred my son to the plastic surgeon.  Then during one of the times DH spent 2 hours at the hospital, the general surgeon came by to see him. DH said wasn't that nice that he stopped by to visit.  Well, I wasn't born yesterday, and I knew this wasn't a social call.  The next time he showed up, I asked why he was there, and sure enough, he assisted with the surgery.

 

I still feel in the dark -- things aren't adding up for me.  I asked DH what the surgeons said to him during the appointments before the surgery, and he is vague about it.  From now on, I am going to every appointment with DH because what are obvious questions to me are things he does not ask or, if he is told, he doesn't remember what was said.

 

DH and I are lawyers, and the surgeons know that.  I'm wondering why I am getting the run-around, and I am going to look into this very thoroughly, both from a medical and a legal perspective.

 

The reality is that physicians are human just like all other professions and some are just not very good with interpersonal interactions and/or are poor communicators.  I have to say that really was probably what distinguished DH's uncle early on in his career (before it became very obvious that he was also a very technically skilled surgeon) was that he is very personable and has very strong communication skills.  Patients/ parents understood clearly why he needed to do what he needed to do and what they needed to do to give them/their child the best shot at a good outcome. Obviously some of that good outcome was due to his technical ability as a surgeon as well.  As an ED physician, I too often see patients in the ED with post-surgical complications that are likely much more attributable to aftercare adherence than the actual procedure.  I realize that some patients will not follow through with what is recommended no matter who explains how important it is but in some of the cases I have seen it really was much more a case of ignorance or misunderstanding than willful non adherence.  If you have questions about wound care or anything that is going to impact what you do between now and the next appointment then I would call/email and get all of that clarified.  Otherwise, I think your idea to go with your son to appointments in the future and take notes is reasonable.  Sometimes even after our kids reach "technical legal adult status" they can still benefit from our guidance and input.  If your son is ok with you speaking with all of his physicians you may want complete privacy paperwork to that effect if this hasn't been done already.

 

Well, I know what happens to lawyer's kids.  One of our friends has a son who has a serious medical condition.  A few years ago he was in the hospital and had a paper chart on which "Lawyer's Son" was written in red marker across the top. :lol:

 

Here is what makes me nervous:

 

Our own general surgeon's staff had no idea that he was involved in my son's surgery at all.  The woman who answered the phone didn't want to make an appointment for him because the doc merely referred him to someone else. I said that is not true, he participated in the surgery.  She checked with "the nurses" and they didn't know anything about it either.  My husband didn't know either; he thought the general surgeon was visiting Stephen out of the kindness of his heart.  I knew that wasn't true.  The general surgeon is a very personable guy, and a very good surgeon, and has a great reputation.  But he isn't visiting people for fun, so I was not surprised to find out he had done part of the surgery.  I also wasn't unhappy about that -- this guy is good at what he does.

 

The person who makes me nervous is the plastic surgeon, and it is solely because of the circumstances.  He did not meet my son and DH until right before surgery.  He is too busy to meet with patients pre-surgery or at the hospital after surgery.  I called and sent an email with questions I had, and I did not get a response.  I forwarded the email to the surgeon, and still did not get a response. When we talked to him, it was for 5 minutes (signing consent form right before surgery), and for 2 minutes (post-surgical report).

 

I think that is a very strange situation. Two of my sons have had 13 surgeries and I've had plenty myself.  Never has this type of situation occurred.

 

Also, the plastic surgeon's PA makes me nervous.  I was told that she has lots of experience and knows everything about the surgeries the guy does, and has all the information patients need, and therefore it is not necessary for this very busy surgeon to meet patients himself. 

 

I met her.  She is a ditz.  No one in his or her right mind would trust her unless they are one of those people who blindly trusts everyone in the medical profession. She was clearly informed by me and by the doctor's orders that my son takes 2 percocet every 6 hours.  She knew that he has a low pain threshold and whatever the reason is, he has Asperger's and that is not uncommon. So she sent him home with meds that ran out when I gave him his Monday at 3:30 AM dose. (Luckily, we had percocet left over from DH's recent dental surgery.)

 

When I called the surgeon's office to ask for another prescription, they called me back.  The PA said she sent him home with plenty of meds and he had only been home for one day.  Well, he'd been home for 2 days, and simple math (4x a day x 2 pills x 2 days = 16 pills, not 15) would have told her that I had one pill left after the 3:30 a.m. dose.  (The 9:30 AM dose would have been the final one in a 48 hour period.) Had she listened to me, she would have known that I have plenty of experience with post-surgery pain, especially with this son who has had 4 major surgeries.  She would have known that we always move to one percocet ASAP, but that does not mean I'm going to leave my son in level 7/8 pain just so I can say he's only taking one pill at a time.  She would have realized that I know the risks of taking percocet -- addiction, tylenol risks -- and that I am fully informed about that and it is not going to be a problem in the circumstances. 

 

At no time did she answer any of my questions with answers that showed she listened to me.  Her responses were vague and had nothing to do with this surgery or this patient. Kind of like when you adopt a dog from a rescue.  Has the dog ever bitten anyone, the potential adopter asks. Oh, you don't have to worry about that, says the rescue.  That is not an answer.

 

At no time did she or anyone else ever respond to my questions about using a different painkiller for my son.  It is like other painkillers don't exist, when I know they do.  How do I know about painkillers?  Because my husband has represented several doctors who are in prison for dispensing them to anyone who has cash, including recently.  Where is the information we have from?  The FBI and the DEA, and many expert witnesses who are physicians.  Also because of being informed by my own surgeons over time, and because I do the research on everything so that my consent is fully informed.

 

Also, her demeanor was not a professional one.  It was a combination of being ditzy and being in a rush.  She was sweet -- she offered to come and see my son on Saturday, her day off, and she lives an hour away.  I didn't take her up on that offer because there was no point.

 

This may all be because the plastic surgeon is an extremely busy man.  He has 6 offices, and his website is all about cosmetic surgery and ancillary beauty services like facials.  Honestly, it's a large business with one doctor and lots of support staff. 

 

Basically, red flags go up for me when I ask a direct question that requires a direct response, and I don't get it.  Has the dog ever bitten anyone?  That requires yes, no, or IDK as a response.  Red flags go up when I attempt to get factual information and am either ignored or given a response that is unsatisfactory unless I am a blindly trusting person.  Oh, you want to cut open my son and it's for a good reason?  Have at it.

 

This has only happened to me in my entire life in this small town.  I don't ever play the lawyer card.  Well, once I did.  I went to see my own physician for a physical.  It was the first time I'd ever met the man.  He treated me like I had seen other people being treated by doctors in this town.  Minimal explanation in words of one syllable, expecting no questions because patients should trust and respect their doctors (and do).  I brought him up short and told him my expectations and credentials.  We get along great now.

 

This is a strange little town.  Perhaps common, but this is the first time I've lived in a small town or spent any time in one.  Very conservative, very authoritarian in culture, generally uneducated population compared to national statistics.  I have never heard anyone question an authority figure, but I've heard plenty of remarks about it when I do ... most of them along the lines of don't you think that is rude?, what did s/he say when you said that? did s/he get mad at you?  I can't believe you asked her that!  Bizarre. 

 

I think the culture around here is part of my problem.  It makes me nervous. After 5 years, I feel like a stranger in a strange land ...

 

So, I don't play the lawyer card, and I don't act like a horse's behind.  You catch more flies with honey, is my motto.  It is a PITA, but much more effective than scaring people half to death.  I am very good at being friendly, personable, caring, polite, and appreciative of every little thing ... even when I want to bite someone's head off.  It has to be a really BAD situation for me to bite someone's head off, and I can't recall the last time it happened. 

 

I will agree that it is a bit of a deviation for the surgeon to not have seen the patient before surgery.  With the caveat that I don't know the whole situation this is not something I would have felt comfortable doing back in my original medical specialty (where I did quite a bit of surgery) or anything I see any of the surgeons at our institution do.  Since you've mentioned you're an attorney I'm sure you understand that informed consent is really much more of a process than just a signature and generally I believe that whoever is doing the procedure should be leading that discussion. Obviously, in more emergent situations, these discussions can be somewhat time restricted and there are certainly times where for this reason the discussion should be started by someone else.  There are also times where things are emergent enough that consent is just implied because the patient isn't really in a position to decide and the treatment is truly lifesaving, like with the three patients I intubated back to back while working an ED shift yesterday afternoon (yeah it was kind of a bad shift with a really bad hour right in the middle of it). 

 

As far as the percocet dosing, there is more concern with acetaminophen dosing toxicity (there was a lot of discussion that the FDA would actually lower the daily max to 2g from 4g which hasn't happened but many physicians believe that is appropriate and will prescribe accordingly)  so perhaps that was the concern even if it wasn't worded well.  I don't know what strength of Percocet your son is taking but with 8 pills a day he is going to be over that 2g limit at a minimum.  We aren't supposed to be writing for the 500mg and 650mg combination products anymore so he shouldn't be over 4g unless that happened.  Your point about stronger pain medicines is certainly something to discuss further.  If your son has a low pain threshold to begin with, and then a bit of an opioid tolerance from prior exposures with prior surgeries, then he may need something stronger.  I'm not clear if the PA or surgeon have now written a new prescription but I hope that you have come to some workable solution.  

[RoughCollie]

LMV, thank you for your thoughtful response.  Stephen did sign paperwork so that DH and I can talk to the surgeons and they can respond freely.

 

He is down to one 5/325 percocet every 6 hours, and tomorrow, I am going to try him on an OTC painkiller on Thursday (a week post-op) to see how that works (not Tylenol, in case he needs a percocet).

 

Stephen doesn't have a wound vacuum.  This may be because absolutely no pressure can be placed in the entire area of the wound, which is very large -- he can only put pressure on the outside of his right hip, period. He spends a lot of time on his stomach as a result. There is a piece of muscle that has been moved to the area from which the cyst was excised, because the cyst was so large.  That is all that was explained to me, so I'm whistling in the dark here.

 

We are really lucky that the general surgeon is a personable guy who has a great bedside manner. 

 

I do understand about informed consent.  I took med mal classes in law school.  I spend a lot of time explaining to people that they don't have a case! Some members of the general public have dollar signs in their eyes and do not understand medical malpractice at all, as I'm sure you are aware.  I am not a med mal lawyer, btw ... criminal law was my game, and I'm retired.

[Liz CA]

Anyway to get a second plastic surgeon involved? I know this is tricky because it may not be in your son's best interest to change surgeons in the middle of what could result in more surgeries.

 

Perhaps you could call the office, speak to someone other than "Ditzy" and request a 20 minute consult or even a phone consultation with the surgeon?

[Annie G]

How long will he be unable to put any pressure on the wound? In other words, when will he be able to sit in a regular chair? Weeks? Months? The whole year? 

 

 

[RoughCollie]

The appt with the plastic surgeon is 8/21.  I'm saving all questions until then. 

 

I have no idea about how long it will be until he can sit.

[Tammyla]

I've been gone a lot and missed you original post, and wish your ds a full and complete healing.  Poor guy, I also hope the home care with the nurse is helpful; that sounds like a lot to deal with in home environment.

[RegularMom]

I've been away from the boards for a long time, but wanted to say I'm thinking of you and hoping your ds has a smooth recovery.