Pended

By the time Patrick and I got home last night all I wanted was a very hot bath and a medium-sized glass of wine - we had a pharmaceutical odyssey; not the good kind - so forgive me for failing to get back to you sooner. For what it is worth I wound up skipping the bath, too, and instead plunged directly into the wine and then bed. Then this morning Caroline and Edward had a sports sampler class at the Y followed by a trek to the library and hey look at that the morning's almost over.

The pediatric infectious disease specialist pulled up the images from Patrick's two CT scans and took us through the Before and After. He said that Patrick in November wasn't the worst he had ever seen but he was pretty bad. He showed us all the parts of his head that should have been black (air) but were white (bacterial ooze) which was... all of them. In pleasant contrast, Patrick's more recent scan looked like a vase and an old lady. His infection has (almost entirely - more on that) cleared and the various linings have returned more or less to normal. So that's excellent. With the gunk gone they can see that he has a cyst/lump/mass in one sinus which probably resulted from the chronic sinusitis and is most likely either harmless and should be left alone or a growing thing that will be need to be removed. The way to determine whether it is lazy or sinister is: do nothing. If it also does nothing you're cool; live and let lie there. If, however, it starts to increase in size it will eventually start shoving bones around and then it needs to be managed. Air quote managed air quote. Since I am not sure what any of that really means I think we'll return to the ENT who also noticed something lumpy in the sinus and get her to benchmark it.

Brief sidebar:

The first thing the Mayo guy said (well one of the first) was that sinus surgery *breezy hand wave* never works for children. And I thought OH GOD because it's not like Patrick was begging us to get his sinuses operated upon - in fact, he was opposed to the idea - and we made him do it because we are bigger than he is and to find out that this decision was wrong wrong wrong... well it feels guiltifying.

I also thought WELL and HUMMPH and that I was never going back to that ENT again... the nerve of the woman... but the more time I spent with the Mayo guy the more I concluded that perhaps there is more grey in the rest of the world than exists in his. Perhaps the ENT who performed Patrick's sinus surgery made the right decision based upon her experience and Patrick is just an outlier or unlucky or whatever because it didn't prevent an immediate recurrence of the disease.

And the reason I concluded this is because the Mayo guy showed us on the initial scan where the openings in Patrick's maxillary sinuses had been completely blocked and noted as an aside that the human maxillary sinus is very poorly designed because those openings are at the top rather than the bottom.

"It is like a toilet where the drain is on the top and you can see how the cilia have to move mucus up and out. Very inefficient. I would have done it differently..."

And Patrick said, "What, evolution?"

And the Mayo guy gave a cocktail party laugh, the kind that goes ha ha ha ha ahhhh ha and smiled without any mirth.

And I thought, oh WHATEVER and made a note to take the ENT out of the untouchables column into which I had placed her. Which goes to show I am irrational.

End sidebar.

And speaking of managing things although Patrick looks infection free on the scan there were some (I don't know. I got lost. I just nod and wait for the report to show up in the mail) something something and the net is that Patrick is on an antibiotic solution that is to be slooshed through his sinuses every day until at least April. 

The doctor wrote the prescription and handed it to me, saying, "Please get this filled at our pharmacy. Other places tend to have never heard of it and then they call me... it is a lot easier for me if you just get it filled here."

And I said, "Yes sir of course sir no problemo sir fill it here check and thank you ever so much for your time" and went down to the pharmacy where I was APPALLED by the line. But I am nothing if not overly concerned about what people think of me so I stood in line and waited to be checked in and then sat down and waited to be called up and was finally allowed to hand over the prescription and our insurance card at which point I was told that there was a code problem of some kind and it would take 30, maybe 45 minutes to resolve it after which they would start on the prescription which would take another 30 minutes. Since Patrick and I had been in Rochester for nine hours by this time I thought oh eff this and said I would just take the prescription with me and get it filled closer to our house.

Back at the ranch, however, I learned that this was easier said than done. After going to three separate pharmacies I discovered that no one can fill this prescription. Well, maybe one of the hospitals downtown but not your average strip mall CVS or even your above average compounding Walgreens. So I guess when the doctor said that it would be easier for him to get it filled by the Mayo pharmacy he was implying that it would also be easier for me. And by easier he meant possible. This morning I had to call the Mayo and ask them to mail it to us and it won't be here for another week. Blast it.

But all in all things are much improved. Patrick at the Mayo, a picture of health.

Comments

[Ellie]

Oh honey. Oh Lord. Oh that all sounds comepletely ... Ergh. One week wait on the antibio? Would driving back to pick it up be easier/more possible/favorable?

You have, as ever, my sympathies and prayers.

[moosilaneous]

Like Ellie, I'd like to point out that I am on your side. All your sides. No, wait. I mean, yours, Patrick's and the Twinkle's and oh, that handsome guy, what's-his-name, the one I might forgive eventually for leaving you with no gas.

My sympathies and prayers, hoping as always for the best.

[Tine]

Patrick does in fact look the picture of health. Rosy cheeks! Intelligent eyebrow-raising! Impatience with Mother! Those things have got to be good signs.

[Stephanie]

I am so glad! I also admit, though, that I am someone sympathetic to Dr. Mirthless Laughter. My interpretation is that he was just trying to make Patrick feel better- it's not your fault, kiddo, the way the set up is, these things just happen- and then Patrick had to be snide, call him out just because he technically could. That he laughed at all makes me think he is nice- he understands that kids who come in are stressed out, so he err son the side of laughing even if they are being snide to him while he tries to be kind of them. And Patrick does look so much healthier. Someone has done something right here.

Although I suppose the result of thinking Dr. Mirthless is nice is to excommunicate the ENT from the Church of Good People again, so maybe your way is better.

[Julia]

Stephanie -

I have the (dis)advantage of having been in the room with them but I would say it was a decided draw. Patrick is an obvious front-runner for taking Little Mr Obnoxious what with being all nine and full of himself and nine and Patrick but then there was the moment when the good doctor asked how long of a drive we had and I was about to unload all of my angst over the horrible unplowed roads and he interrupted me to say, I was just wondering whether it was worth it for me to drive up there to ski - I have excellent tires.

You had to be there but between the two of them, really, the quiet charm of the ENT - blood-thirsty butcher or not - shone like a beacon.

[Shannon]

Julia,

I think you're smart to go back and have the ENT look at the lumpy spot now that it's easier to see. Sometimes a doctor's "let's wait and see" idea isn't such a good one. Good that you're getting a second opinion.

As always, thanks for catching us up on Mr. Patrick.

[Jan]

Figured it was all procedural and driving and wine and family maintenance delay time, so did not write a nervous post to your last. Soundth good(th)! Onward!

[JP]

So glad to hear that Patrick is cleared up!

[KD]

Good news, even if someone who specialized in the interesting-cases area of infectious disease study is maybe not....interpersonally gifted.

Here's to a healthy Patrick!

[Heather P]

Dear lawdy! I really feel for Patrick since I have a diagnosis of chronic sinusitis as well.

[Liz]

There is a lumpy spot on someone's sense of humor if they can't genuinely laugh at a nine-year-old offering up, "What, evolution?" as an answer. Priceless.

[Kirsten]

This sounds like great news! This is the first time something has worked to clear those cavities, yes? Of course there is the lump to think about, although it seems there are good, likely benign explanations for that... I get the sense from your post that you aren't feeling terribly relieved, perhaps due to the wait and see spot you are in, coupled with the antibiotic wash. But from an outsider perspective, it sounds good! I hope he is feeling better too.

[Heidi]

With all that gunk outta there Patrick's synapses will fire even quicker, hence his excellent response to Dr. Mirthless. (And hey, I don't even play a doctor on TV.)

He does have lovely color in his cheeks. Here's hoping he's feeling a difference.

[Jessica]

It occurs to me that maybe when Mayo Doc says sinus surgery never works it means HE has never seen a child where they did. Which makes sense, because if the surgery worked on your child, why would you take him to Mayo?

[Shawna]

Is it creepy to say I'd find it very interesting if you posted the scans? I mean, I'm sure you don't have the actual scans to post, but to see them side by side would be kind of cool. Jut sayin'.

[Sarah]

I like this explanation by Jessica. Maybe it has never worked on a child who has come to him. Also, he himself is an infectious disease guy, not a surgeon, so...
I personally did not think Patrick looked so bad in the "peaked" picture in comparison with some earlier ones, but this is definitely an improvement over that, and favorable background colors as well.

[Elizabeth]

Snide or not, I loved Patrick's comeback to Dr. Mirthless because it was so very spot on. I think the laugh was mostly because the doc had just been got but good by a nine year old and knew it in his heart of hearts but didn't want to admit it to himself.

Of course I'm of the opionion that not most doctors aren't really all that smart. Perhaps that has something to do with all the doctors who told me over the years that 'some cramps are normal' when it turned out I had a really bad case of endo that caused my infertility.

[LMM]

Huzzah. Happy to hear that he is not only well, but in true Patrick form. :)

[rosie]

You did nothing wrong by trusting your ENT. I am a NP who sees children peri-operatively in the hospital. All the treatments you've described have sounded reasonable. I've seen sinus surgeries work many times with children. Granted, occasionally they need to be repeated a year or two later, but overall good outcomes. Patrick has some crazy stubborn sinuses. Period.

[Sara]

SO glad that the infection is cleared. Whew!

As to the rest, I must be a total idiot (or mirthless), but I absolutely don't get what Patrick's response had to do with what Dr. Mirthless said or why it was funny (or snide, or anything else but a non-sequitur). He was pointing out that sinuses are poorly designed, and Patrick said "what, evolution?" Do I have the sequence right? So was Patrick CALLING Dr. Mirthless "evolution" (as in "so, evolution, how is your day going?")? Is there a missing "better than" and the "what, evolution" was an incredulous response to the notion that human design could improve on evolution? (In that case, I'd like to offer the human obstetric pelvis, wisdom teeth, and the appendix as Exhibits A, B, and C in the "what the hell was evolution thinking?" display) or did he mean something else entirely (was it a God vs. evolution joke? In which case Patrick was casting Dr. Mirthless as God?)? Honestly, in Dr. Mirthless' shoes, I'd probably have just stared at Patrick blankly.

Sorry for the digression. The main point of my comment was intended to be that I'm glad that Patrick seems to be on the mend.

[Stephanie]

No, Dr. Mirthless was saying he would have made the tubes differently, so the joke is he said he would have done "it" differently, but Patrick made a play on the fuzzy antecedent. So instead of the "design of the tubes," P said "evolution," to call out how absurd the doctor was being- how could he have made them differently? He could not, unless he was going to make himself in charge of evolution. Which obviously he can't, so, why say anything, I suppose.

And Julia, I can see that being a personality type you have to be there to see, blech blech on the skiing, Dr. Mirthless-excellent-tires. I do wish bedside manner was a class in med school. I think there are plenty of that type at Mayo, full of themselves surgeons who, I suppose, never had people to teach them not to be nine.

[Julia]

What Stephanie said plus I feel compelled to say that I DO reprimand Patrick, really I do. All the time. I mean I repeat these things he says but I don't want you to think I'm endorsing him or beaming fondly while he is sassy or snide or snarky.

If he has any say on the wording of my headstone it will no doubt read: That's enough from you. Um, you know, because that's what I say to him all the time. Also I guess that will pretty much be enough from me.

[Lori]

I'll chime in to support the idea of following up quickly on the lumpy thing. Speaking from experience in our (extended) family, if it is something that needs to be "managed" - it is definitely better sooner than later. Best of luck and hope it all resolves soon!

[Stephanie]

I don't! I mean, I'm sure you do! I meant just that The Good Doctor Mirthful Tires did not have anyone to do so, if he was vying for most obnoxious with a 9 year old kid. Really, I would not hold a mother responsible for a snarky comment from a 9 year old, particularly one, judging from the comments, only debatably snarky. I think it is what they do.

Sorry about all this.

[Neishia]

Patrick is brilliant. Hilarious. I would be snarky too if I were still trying to find an answer to my sinus issues. Hee.
The things that come out of my child's mouth are usually not funny until an hour after pure mortification. But, still funny when I get over it. Patrick slays me.

[Helen B]

Surgery stinks - not just the surgery itself but the whole recovery thing as well. And I think you and all the other mothers with more than one child are miraculous. I only have one and am currently caring for my husband after his surgery. Bonkers. Glad Patrick is much better. He's invincible. I remember superhero capes somewhere in the past.

[Pam L]

I have also recently been given another ticket on the guilt train. It seems my oldest son, who had gum surgery today and really needs jaw surgery, which is not covered by his insurance and costs $30k(he's on his own now and has good coverage otherwise) to correct his level 3 overbite, could have been saved all this agony if we had not had his braces done until he was 14-16. Back then, they were doing it at age 11 and up and when we went the first guy wanted to do a whole bunch of stuff right away, I got another opinion from a guy who said, let's wait and check again in 6 months. 18 months later we did top and bottom braces, and now I find it was a very bad idea. He did not have an overbite at the time, just crooked teeth. He would have ended up with somewhat of an overbite, but we (I) made it much worse with braces. And yes, the braces also contributed to the receding gums Guilt, it's my middle name.

[kris (lower case)]

'This morning I had to call the Mayo and ask them to mail it to us and it won't be here for another week. Blast it.'

really? when i call my vet (you know..dog dr) for drugs to be mailed i have it the next day. why can i get dog meds the next day but they need a week? really. i think you need to call back and ask them this. totally unacceptable. i can't even imagine what your day there was like. you are a saint.. well..more of a saint than i am anyway!

[Alex]

Patrick does look a lot rosier. This is good news!

[stacey]

Just catching up a bit - thanks for the update. I've had some success in explaining the concept of negative numbers using the example of temperature. By the way, I remember you asking for suggestions on books you can read with Patrick, I just finished Chasing Vermeer by Blue Balliett with my son and we really enjoyed it (perhaps me more than him but still I think it could be right up your alley).

[Jen]

I'm with all the this sounds good posts. Not done, cured and over with, but much closer to that than before.

Patrick's comment is HI-larious and it sounds like the doctor just manages to control himself enough to not tell his patients and their parents to just shut up and bask in his knowledge. Not that I can't put up with that attitude if I know I'm getting somewhere and it seems like you have.

I bet he is secretly replaying that moment in his head wondering how it was that a nine year old got in such a very, very good line. Envious, even.

[Jacqui]

Perhaps the mirthless laugh was a sort of "I don't believe in evolution" kind of laugh.

Coincidentally I was trying explain sinuses to my six year old this morning and when I got to the infection bit she just looked at me like I was crazy and then went "ewwww..." Which pretty much sums up sinuses I guess.

[Ellie]

I just wanted to come back and mention -- a lone, quiet voice in the internets -- that yes, please, please do follow up on the lump/mass/cyst asap? As someone else mentioned up above, the wait and see approach really isn't always appropriate, and in any case, is better placed coming from the appropriate surgical consult. I **don't** like being a nagging stranger in the internets it's just ... If it were me, or my child? I wouldn't wait. I'm not trying to be alarmist or annoying, promise! Just a bit twitchy on the subject of lumps in heads as the brain tumor they discovered in mine not so long ago was treated as an "oh that, oh goodness, it's no problem! Come back in six months! Goodby!" To which statements I looked askance and said, "no thank you." It was removed six weeks after discovery and was, in fact, attached quite firmly to a major artery. My take home lesson from this is that CT scans and MRIs are terrific -- to a point. There is definitely a margin for error in terms of the seriousness of the issue (both ways, I suppose?).

Sorry, will stop now! Hoping you are able to get the antibio sooner rather than later from the mail room. Oi.

[Christy]

Thanks for the update on Patrick! Glad things are moving in the right direction.

[Chris]

So glad to see your update. Now that I have a friend who has been at Mayo for over 70 days since her liver transplant, I think your experiences are on par with hers. I am not surprised that it was going to take an hour to get the meds from the Mayo pharmacy. When I was up there to visit her, I got to see first hand how things work up there. We did a lot of waiting around for things and tests.

However, given you had already been there 9 hours, I probably would have made the same decision as you to get it filled nearer to home. Mayo, awesome at what they do, but somewhat of a pain in the neck.

[Stephanie]

I say yay for Patrick for being on top of things enough to outwit the dr. I'm with whoever above said not to wait. Thinking good thoughts and glad that Patrick looks better.

[Shana in Texas]

Evolution?! Oh, Patrick! <3 U

[elizabeth]

There's not much a big glass of wine can't make even just a bit better. And I love Patrick's evolution comment. Hope he feels better soon!
http://bebesuisse.blogspot.com/

[Christine]

Rosy cheeks and a smirk! He looks much better.

[Julie313]

OK, so I've been following you blog for YEARS and have only posted a handful of times, but now I've got to tell you that you and Patrick's sinuses are the doppelgangers of me and my son's sinuses. Minus Mayo, but right down to the hour long wait at the out of town pharmacy for the rinse that after waiting for an hour was declined to be covered by insurance. William (my four year old) had surgery in September and the ENT said his sinuses were so bad that the infection was forming into polyps. She cleaned it all out and we were glad we had gone forward with the surgery (my husband had been on the fence). Then, I read your post about what the Mayo Dr. said about sinus surgery in kids and about crapped. And decided to NOT tell my husband. Will is just now going for more than a week without green gunk streaming from both nostrils. Until his current routine of meds he would be clear after two weeks of an antibiotic then be off for a week and go green again. He is now on nasal drops in the morning, oral antibiotic at night and (uninsured) nasal rinse at night and he looks pretty good. The plan is to stay on this routine for three to six months.

(also have in common with you: multiple IVFs, miscarriages, PGD, and boy/girl twins (except I have two sets - my younger ones are about a month older than Edward and Caroline. Anyway, I love reading your blog!)

[winecat]

Great news about Patrick and his sinus.
Loved the evolution comment.

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[geohde]

Sinuses do seem to be exceedingly poor design. I include them with the humble appendix, wisdom teeth and peddlers of vi@gra in comment sections of blogs.

G

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