my son's surgery at house: a recounting of the tale, pre-op to 12 days later.

[areles]

this is intended to be a full recounting of my son's experiences pre and post op at the house clinic.  it will be quite long.

my son, due to a rare illness in babyhood (opsoclonus myoclonus syndrome), was left developmentally delayed with speech articulation issues, etc.  i only mention this because as a result, he was approved for SSI at age 2, and again at age 18, and that is how we ended up discovering his AN.  because last fall, the SSA decided to redetermine (and ultimately deny; we're still in appeal, five months later) his benefits.  as a part of their redetermination, he was sent for a 'mental exam', after which he expressed frustration with not being able to express himself the way he'd like to.

september 2015:

at the time, i was mostly angry at the way the 'mental exam' went.  she spent five minutes with him, asking 'baby' questions that couldn't possibly expose his developmental delays, so it was kind of as an aside that i suggested speech therapy to my son (privately i was too busy mentally battle-planning for a fight with SSA).  i thought he'd immediately refuse, but to my surprise, he didn't, and so when i got back to my office i launched into research on the speech therapy front.

october 2015:

long story short, we obtained services at providence hearing and speech center, and as part of their intake process, they did a hearing exam.  although i'd been suspicious of hearing issues since his original diagnosis, all testing throughout the course of his life had turned out normal, so i expected this exam to be a formality.

it wasn't.  the audiologist noted a 70% hearing loss in his left ear, and suspecting a tumor (which we were not REMOTELY concerned about), suggested we have his PCP refer to an ENT. 

november 2015:

 the ENT was likewise not concerned about a tumor, and in fact, thought the hearing test we brought with us from providence was incorrect, but reluctantly ordered an MRI anyway.  he was as surprised as any of us when it came back showing a 2.5cm acoustic neuroma (ultimately determined to be 2.8 at its widest point).

december 31, 2015:

and so our journey began.

by the end of that evening (12/31/15, the day we got the call), i already knew, thanks to this forum, that i wanted to consult with dr. schwartz and secondarily, dr. friedman.   we had to wait eight days for our followup with the ENT, and in the interim got copies of the MRI and sent off to house and keck and had already spoken with both by the time of our ENT followup, at which he mentioned referring us to a "university center".  i to this day don't know what he had in mind (perhaps usc, perhaps elsewhere), but i requested the house clinic and within two days due to a coding hiccup, we had our auth for consult.

there was a lot of heartache and panic and frustration and 'really?  he has to have something ELSE to overcome' in those intervening weeks, but i probably don't need to get into them because everyone reading this has been through it themselves. the concern about SSD, the concern about ongoing headaches afterward, the massive concern of facial nerve protection, the concern about strange tastes and numb tongues, the concern about balance, and the concern about surgery, period, but by the time we got the call from dr. miller at house, and dr. friedman at usc (both within an hour of each other on 1/4/16, with ent followup on 1/8/16), i already knew translab would be our only option, and both physicians agreed it was.  so at the house consult with dr. schwartz (1/14), it was merely more confirmation, and the only question was 'when will we have the surgery?', not who, and not which doctor.

a note for those considering consulting with each facility, and i'm going to be honest.

i found dr. miller at house to be patient, warm, kind, and knowledgeable.  i liked her instantly.  i found dr. friedman, with whom i spoke an hour later, to be just as knowledgeable, but very pushy.  he seemed more interested in 'selling' us, and decrying house, than in anything else.  obviously he's a fine physician, and i do kind of wish we'd found out about my son's AN prior to his departure from house, but his bedside manner was off-putting.  and since he wasn't the one who would be debulking the tumor, dr. schwartz and house were my obvious and easy choice. 

that said, as we were talking to both facilities (apart from my discussion with dr. miller, which was wonderful, and comforting), i have to admit that usc was far more... swaddling, warm, and comforting.  kris, their patient advocate who has been through this herself (drs. schwartz and friedman; she didn't say this exactly, but it was obvious by the timeline of her surgery that that's who handled her case), was amazing, and spent nearly an hour with me on the phone, reassuring me and sharing her personal experiences.  she was also very helpful - or rather, it was obvious she would have been, had we proceeded with usc - in insurance navigation, etc., whereas calls to house asking for insight and advice were met coldly and unhelpfully.  the message from usc was "don't worry, we got this."  the message from house was, "when you have your **** in order, let us know."  had it not been for dr. schwartz's reputation, i may have early on decided to switch gears.  but in the end, i decided back office disappointments didn't matter quite as much as - again - the guy who'd actually be cutting into my son's head.  so, we stuck with it.

this leads me to:

we had our first consult with dr. schwartz on jan 14, as mentioned, and we likewise liked him instantly.  there's not much to say here other than that; we'd already been made aware of the appropriate surgery, and my own research plus my conversations with miller and friedman, and subsequent explanations to my husband and son, made the appointment with dr. schwartz more about meeting him than about any medical specificities.

at that point, we were turned over to the surgery scheduler.  this is where things turn briefly negative, and it could be another five paragraphs on its own (and may turn out to be), but suffice to say, none of us were fans.  she was awesome when she thought we were a PPO patient, though spoke too fast and gave instructions too quickly to follow (presumably from it being a matter of rote for her), but was willing enough to slow it down where we asked her to. however, she  became cold and unhelpful once she discovered we were on an HMO, repeatedly pointing out that 'we aren't contracted with that IPA' and suggesting they would 'probably deny.'  my years of experience with them indicated they were unlikely to, but she was in disbelief and as such, started treating us more like passers-through.  perhaps because of this, perhaps simply because she doesn't like dealing with HMOs, she refused to interface with my IPA, leaving me to do so myself (following up on the auth request was a five day process requiring multiple calls - not that they didn't approve immediately; they did - it was that she had provided a nonworking fax number and so it took two days of them faxing to no avail, and me calling her to ask if she'd received it at which point she said she hadn't, and told ME to call them and find out why, till i discovered they HAD been faxing... to the wrong number.  i was left to straighten it out myself.) i've never ever had to interface with my IPA before; the doctors offices have always handled that (including the ENT's office for the original consult), so it was very frustrating - further, HIPAA made it difficult for me to do so, and i became intensely annoyed by the end of it.

but finally, that was that, and on 2/3/16, we had our surgery date:  2/24, with preop tentatively scheduled with both physicians (schwartz, miller) at 11a on 2/19.  at that 2/3 visit, she told us she'd confirm the preop date and call us when it was set, but nine days later i still hadn't heard back.  i emailed her to ask if it was on the calendar, and she said it was, and that she'd send an official email confirmation 'shortly'.  by the preop appointment on the 19th, we'd still not received the confirmation, but went in anyway.

we got there and discovered that not only was our appointment not at 11a, but it was at 11:30a with Schwartz, and with miller at 1:05p.  annoying, but whatever.  the front desk asked us if we'd had a pre-op hearing test, and when we said no, insisted that there should have been one scheduled.  i suggested that perhaps it wasn't necessary because he was going to lose his hearing no matter what, but they insisted they needed to look into it.

in the meantime, they called us back to meet with dr. schwartz right at 11:30a, which was a formality of a visit since we all knew what was happening and what the deal was.  however, in that visit, dr. schwartz indicated our surgery was 2/23.  i said, 'are you sure?  we were told 2/24...' and he checked his calendar on his phone and said, 'nope, it's the 23rd.'  it became very clear that the surgery consultant had failed to inform us of the date change, which was infuriating, as all of our arrangements had already been made for the following day.  anyway, we continued chatting, and all was well, and when he asked if we had any other questions, i mentioned that the front desk seemed concerned we hadn't had a hearing test and none was scheduled.  he was like, 'oh!  he definitely needs a hearing test, let me find out what's going on.'

ultimately they stopped someone from going to lunch to perform the test, so it all worked out for us, but when i emailed the surgery consultant from the lobby, asking why we hadn't been told a) of the surgery reschedule, b) the physician appointment changes, and c) the need for a hearing test ("and why wasn't it scheduled"), she insisted she had told me all of the above and that the hearing test had indeed been scheduled for 11a.  (it took everything within me not to retort, "if that's the case, why was the front desk a) telling us our first appointment was at 11:30, and asking why there was no hearing test scheduled?")  she said this despite the email string she was replying to indicating her last message to me was that she'd send confirmation for the preop appointment "shortly," and never actually did so. 

it's one thing to make a mistake.  we get busy, i get it.  a simple, "omg, i'm so sorry!' would've sufficed nicely.  quite another to blame the mother of the person having brain surgery for said mistake.  i was aghast when she stubbornly insisted she'd told me about the surgery being moved up a day, since for months our entire lives (and arrangements at all three of our jobs) had revolved around 2/24.  believe me, had we ever been told it was actually 2/23, we'd certainly remember.  that would certainly be locked in.  all we'd thought about for the prior two months was this day.

when we met with dr. miller at 1p that day, we shared all of this with her, and she was furious, and told us she would be 'having a word'.  clearly she did, because we ran into the surgery scheduler on our way out and after she apologized all over herself for the 'misunderstanding,' she reaffirmed she'd scheduled everything correctly and that we hadn't remembered correctly.

but, whatever. that was the last time we had to deal with her, and the actual physicians had already proven themselves dissimilar, and so onward we went.  i even feel bad pointing this out, especially since i've never read of others having similar experiences, but it was frustrating enough that i'd feel remiss if i didn't share.  i have a feeling nonlocal and/or PPO/medicare patients do not have this experience.  or perhaps she simply didn't like US.  but mostly, i boil it down to her simply disliking dealing with HMOs, and i can't exactly blame her, but either way everyone is getting paid (even more than usual, since the IPA wasn't contracted), even if it takes a little more legwork.  but honestly, it wasn't that hard.  both the initial consult and surgical auths were given within 24 hours of request, no fight.

(it's worth noting that that afternoon, as we waited the hour between appointments, that we heard no fewer than four people check in at the front desk to discover their appointments weren't on the doctors' calendars.  one drove two hours for said appointment.  they got fit in, but not without extreme derision on the part of the front desk.   it's also worth noting that when we were there yesterday for my son's first followup, we heard at least one patient have the same experience.)

but onto surgery day:

the night before, we checked into a nearby hotel.  i'd waited too long to get confirmation of reservations at seton hall, so we stayed about a mile away, which worked out well for all of us.

and despite the above frustrations, surgery day could not have gone more smoothly, from start to finish, despite a well-meaning hiccup near the end (but i'll get to that).

we checked in at 5:30a.  all involved with prepping nik for surgery were kind, engaging, funny, and caring.  my son was at ease enough to crack jokes, and in fact, every photo i took of him prior to being wheeled into the OR were of him smiling.  one by one, his team introduced themselves:  the surgery RN.  the neuromonitor (who was a wonderful lady whose name i wish i recalled).  the anesthesiologist.  dr. miller came by to say hi and answer any last minute questions.  dr. schwartz, whose relaxed and casual demeanor put us even further at ease.

and that was that, for ten long hours.  we sat in room 618 waiting, and waiting, and waiting.  periodically, a nurse would call just to let us know things were going well.  we were told that after surgery, the surgeons would come in to talk to us and it would be about an hour after that that we'd be able to see him in ICU (give time for anesthesia to wear off, for pain meds to kick in).  in the room with me were my husband, his parents, and his sister (who flew in from panama to stay with us for the duration of the hospital stay).  for some reason, everyone in the room had "eight hours" locked into their heads, despite me telling them that was probably the minimum.  but because that was the number they had in mind, at 4:20p, nine hours hours after nik had been wheeled into OR, and eight hours after the actual procedure had started (we saw his status change to 'in procedure' on the monitor at 8:20a), everyone started getting antsy.  i kept trying to tell them it would take more time, but at the ten hour mark, my father in law decided to go out and see what was what.  as he left the room, we saw status change to 'discharged,' meaning the procedure was over.

i suppose because they (the nurses) felt we were anxious to see him (we weren't - we were comfortable with waiting an hour; it's just that everyone was anxious to find out the procedure was over), they told us we could head back to the icu, even before drs. miller and schwartz came out to talk to us.  so we headed that way.

i don't know how many hospital movies/tv shows you've seen, but you know that scene in all of them where the surgeon comes down the hall to tell the family what happened?  sometimes they look drawn and tense; others they look relaxed and happy?  and you can tell by their body language and expressions the sort of news you're about to get? 

the latter is how drs. miller and schwartz looked as we ran into them.  we were on our way to the doheny wing, and they were on their way to us, and they looked... it's a thing that will stay with me forever.  arms swinging, talking to each other smiling and relaxed, and they looked no more tense than if they'd just come off the golf course.  "it went beautifully.  he did great.  we got all the tumor.  his facial nerve looks good."

oh.  let me digress a moment here.  i read somewhere along the line that it was important to share our priorities with our physicians, so we did.  'get the tumor, protect the nerve.'  in my first phone consult with dr. miller, she expressed that the tumor was large enough at a young enough age that she felt it would be prudent to aggressively approach.  (for that matter, dr. friedman said the same thing when we consulted with him.)  but we repeated that mantra over and over, making it clear that we wanted that nerve protected. as such, in all our runup visits, we were assured that if they had to leave part of the tumor to protect that nerve, they would.  i wasn't thrilled about the idea of any part of the tumor being left, but i also didn't want my son to have to deal with facial paralysis on top of struggling with his original childhood diagnosis, brain surgery, becoming SSD, any of a number of post-op issues people have.  so it was critically important to us all that the nerve be preserved, and i had a feeling going into surgery that they'd end up leaving part of the tumor in order to do so. 

so when they said, 'the tumor is gone,'' we braced ourselves.  then they followed with, 'the nerve is good,' and we all looked at each other and started crying.  i wanted to hug them, but i wasn't sure it would be appropriate, and so i didn't.  we talked a bit and thanked them profusely and they ushered us on our way to icu.

[areles]

(turns out my full recounting was too long for the board, so, to continue):

this was actually a mistake, the hiccup i referred to.  we got there only about 15 minutes post-op.  seeing my son in that dark room, head bandaged, oxygen mask, crying in pain (sobbing in pain) was - until four days later - the most gutwrenching thing i'd ever seen, and that includes his 1994 hospital stay, wherein he was seizing and running fevers of 105 and no one knew what was wrong. it was... awful.

as the nurse was administering anti-nausea meds, this was our first introduction to dr. stefan, the internists\ who follows these patients after surgery.

it went kind of like this:

"hi, nikolas.  i'm dr. stefan!  how you feeling?"
"like ****!"
"of course you feel like ****, you just had a hole drilled into your head!  iris [nurse], what meds did you give him for pain?" 
she answers with a drug i hadn't heard of.
"no!  morphine!  12.5!  right now! NOW!"

she hustled.  within moments, nik's vicegrip on my hand loosened.  dr. stefan continues:

"smile!" 
my son smiles.
"squint your eyes."
he squints his eyes.
"wrinkle your nose."
he wrinkles his nose.

we smile in relief that he can do all these things with no facial weakness present.  dr. stefan continued with his exam, explaining what he was doing all the while, peppering with his commentary on what he was seeing.  he warns that facial weakness is likely to start occurring the next day due to the swelling of the nerve, but that things look good.

we loved dr. stefan.  we loved him then, and we loved him even more by the end of our hospital stay.  he's brusque and brash and says exactly what's on his mind, but i admire that in a doctor, and above all, he came across as knowledgeable, caring, and cautious - more on the last in a bit.

we only stayed with nik for ten minutes, as soon as we knew the meds were taking effect, but he managed to crack a joke even in that short period of time.

before the morphine was administered, i asked him how his pain was.  he sobbed and started flashing his hand at me.  five, five, five, five, five.  i asked him if his hand hurt.
"no, mom.  five ten fifteen twenty twenty-five thirty."
"your pain is a thirty."
"yes, my pain is a ****ing thirty."

then after the morphine, my husband encouragingly pointed out that he'd overcome yet another challenge.  my son:
"sure did.  what's the next one?  i'm ready."

he also surprised us in that when we asked him how long he thought his surgery he lasted, said, "well, it's about 5:45 now, so i guess ten hours?  i've been back here for a few minutes."  we were thrilled by his lucidity and awareness in spite of his pain, the anesthesia, and by now, the morphine.  and even if he knew because someone had told him, we were pleased to hear it registered.

somewhere in here he mentioned his right arm hurting, but we let it go.

we gently hugged him, told we loved him, and let him know we were leaving him to rest but would be back the next morning.

my inlaws went in, then.  they reported him being relaxed (as much as possible, anyway).  when my sister in law told him he was a champion, he started singing the song.  "we... are... the chamPEEahns...' we laughed about that for the rest of the night.

when we arrived the next morning, we were astonished to see him sitting up in a chair eating.

we were further amazed when he was released to a private room at the 18 hour mark.  and later that afternoon (still within 21 hours of surgery) walking assisted with the PT.

on that note, i hadn't realized until about two weeks before surgery that his balance nerve would be severed, and when i heard this, i was concerned.  my son is a surfer, after all, with a childhood history of ataxia, anyway.    dr. miller assured us that the tumor was so large and his brain had already been compensating for so long that she didn't anticipate balance being much of an issue for him.  more on that shortly, but note.

wednesday afternoon/evening, things were looking okay.  he was getting used to hospital life, to being deaf in one ear, and reporting head pain in consistent tens.  he was also extremely dizzy and nauseous, which everyone chalked up to normal.  by thursday,  he was still complaining of a painful right arm, and i could clearly see the hand and arm were swollen.  i reported this to the nurses, who chalked it up to being on that arm during surgery, but i was unconvinced (especially since dr. miller had in the interim told me he wasn't on that arm during surgery, nor were any IVs in it), and so reported it to dr. stefan as well, who immediately came by and ordered a stat ultrasound.  due to the way the floor nurse put in the order, four hours later it still hadn't been done.  i raised some hell to no avail, and finally called dr. stefan's office, who got involved and suddenly everyone was hustling.  DVT was ruled out, and by friday morning, the swelling had gone down and the pain had subsided. 

however, thursday night, his visiting girlfriend reported to me that he was throwing up a lot.  i was panicked, fearing a csf leak.  i called dr. chen, the surgery fellow on call, who assured me it was nothing, and nausea was normal.  i just felt like, he wasn't nauseous all day wednesday, but it had ramped up thursday, and so it might mean something.  having had a csf leak myself, i kind of knew what to watch for.

sure enough, friday morning, he reported to me 'a little drip' that came from his nose as he bent forward (despite being admonished a thousand times not to) in the bathroom.  i called the nurse, she called dr. chen, he called everyone else, and within five minutes the calvary had arrived.  they hung him for six minutes, and nothing.  content to chalk it up to residual fluids, they went on their way.  i tried to believe them.  after all, they do this every day, right?  but everytime he sniffed, i went into a panic, and i must've asked him a thousand times over the next eight hours if he felt anything.  he kept assuring me he didn't.  at one point i discussed it with dr. stefan, who seemed as concerned as i was, and advised me to 'definitely keep an eye on it.'

i went back to my hotel around 7p, telling the nurse to call me if anything happened.  unfortunately, that was the start of shift change, so i'm not sure if she didn't parlay the message or the night nurse didn't care, but i didn't know anything was amiss until i arrived saturday morning at 7a - the day of his probable release - to see dr. miller's name on the whiteboard (it had been stefan to this point), and "NPO" outside his door.  i arrived during shift change again, and so nurses were all about.  'what does this mean?' i asked, gesturing to the door.  "oh.  he can't have anything by mouth, he's going into surgery this morning."  i felt like vomiting, and nearly did.  (turns out he woke up in the middle of the night to a wet pillow.)

i entered his room to find him sitting in the chair, eating breakfast and watching tv.  nothing looked amiss.  he was reporting pain at the standard 8, with dizziness and nausea, but by this time four days post op i suppose he felt like it was normal, and so he wasn't complaining.  his incision looked WONDERFUL.  the bandage had been removed the day before, and any latent swelling was completely gone at this point.  i was heartbroken to imagine them going into it again.  shortly thereafter, dr. chen entered the room to have nik sign off on the paperwork.  he told us what they were going to do (open up, repack, close ear canal), and nik couldn't help it - he broke down, then, and cried.  and i cried with him.  i'd been strong to this point, because i knew everything to expect and was better able to help him jump each hurdle, but this was my biggest fear, and one i did not fully prepare for because i had hoped against hope that he'd be one of the 90% who don't have to deal with it.  why i thought he wouldn't win this ****ty lottery too, when he'd won so many ****ty ones beforehand, i do not know.

shortly thereafter, dr. miller arrived to find me tearfully explaining the situation to my husband outside nik's door.  she explained why they were being aggressive.  i asked her, as i'd asked everyone the day before, if the leak could be why he was having such severe head pain, dizziness, and nausea.  she said maybe, but seemed skeptical.  she told us exactly what they were going to do, and assured us there would be 'little chance' of a leak after.  she said, 'we could wait and see if it heals on its own, but i feel more comfortable taking care of it.'  i didn't disagree, frankly, but it was heartrending.

anyway, at 10:30a that morning, he was wheeled back.  again.  he didn't come out until 3:15ish.  dr. schwartz came by in the interim; off that day and not attending ("it's ear surgery; i'm the brain surgeon"), stayed in 618 with us for about 45 minutes or so, reassuring us and telling us the story of his own spinal leak many years ago.  at 3:30, we were told the surgery was a success, and they'd let us know when we could visit.  at 4p, they authorized us to enter his room (no icu this time), telling us to wait five or ten minutes so he could go to the bathroom.

not wanting to see him in the state we saw him in last time, we dawdled for an additional 20.

here's where the story gets negative again.

we saw nik only 15 minutes after the first surgery, so it seems understandable he hadn't been administering pain meds by the time we saw him.  this time, we intentionally dawdled, entering the room a full 50 minutes after he'd arrived, and he was - again - sobbing in pain.  pressed the call button as i entered.  i asked him what he needed, and he simply cried, 'it hurts.'  have you not had your meds?  'NO!' as he pressed the button again.  i ran out of the room to ask the nurse what the deal was, and she said, 'i'm getting to it.  i'll be right there.'  i would've stayed to argue, except just then my son cried out an expletive (which he had not done through ANY of this), so i ran back into the room.  'i need something, it hurts.'  i asked him how many times he'd pushed the button since arriving in the room.  'four,' he said.  FOUR.  FOUR TIMES IN 50 MINUTES.

i ran back out - 'he needs his meds!'  she assured me she was getting them, and said she needed a witness to pull them.  "he's almost an hour out from his second surgery in four days, DO YOU NEED ME TO WITNESS???'  somehow it got rectified in a split second, because next thing i knew she was in the room administering dilaudid.

i've dialed my outrage way down for the purpose of this missive, but suffice to say i'm still infuriated even thinking of it.  though his care up to this point by the hospital had been good, it was clear that weekends involved a 'b' team, a not-great one at that.  setting aside the lack of a phone call about my son's surgery (something that outraged the docs once i told them), his care post-surgery was nonchalant at the very very best.

but, after the pain meds took effect, he was mostly himself.  making jokes, albeit wan ones, and asked me to read to him.  we didn't have a book handy, and knew of nowhere to get the one he wanted ('life' by keith richards), so my husband quickly downloaded it and started playing it.  turns out johnny depp's voice is extremely soothing.

i resigned myself to sleeping at the hospital that night, unable to trust the nursing staff to minister to him, but once the night nurse (cheryl) came on board, she proved herself amazing and assured us we could leave, that she'd set up right outside his door.  and so she did.

he was overdue for his steroid, which i'd been telling the day nurse for an hour at that point, but cheryl assured me she'd administer it after we left.

so, we left.  nikolas needed the rest, and frankly, so did we.

i arrived the next morning to a new nurse (i arrived just after shift change) and asked her if he'd gotten his steroid the night before.  she pulled up the chart and showed me had - within 11 minutes of our 9p departure, and again exactly eight hours later.  saying a private 'thank you' to cheryl, i thanked said nurse and went into my son's room.

i'm going to boil sunday down to this:

from the time i asked the nurse about the steroid (8:30a), we didn't see her again of her own volition until 11a, when she came in to administer dilaudid.  any time he needed something in the interim, i had to go chase her down, and a full 90% of the time could not find her, and other nurses had to help.

after 11a, we didn't see her again.  at all.  around 2p, i realized his steroid was due and went to find her to ask about it.  for once, she was right outside the door - though on a chart for the patient in the next room.  i asked her to check if his steroid was due when she got a chance, and she responded, 'it's not due yet.'  i was a bit taken aback - does she have his chart memorized?  because it's certainly not in front of her, and to my knowledge, 6a was eight hours ago - so asked her to please pull his chart when she could.  she assured me she would, so i went back to sit with nikolas.

20 minutes later i'd not heard from her, so i went to find her again.  seeing me coming, she hustled to nik's chart, where she confirmed it had indeed been due at 1400.  about ten minutes later, she brought it in.

i suppose my concern at that point was... would he have even gotten it had i not been there to remind her?

that was the last time we saw her until 6p, when i asked her for a shot for him.

[areles]

(and in conclusion):


we stayed once again till the night nurse came on, so i could meet her and do my usual reminding to call me ("my number is on the board") and just to check her out.  night nurse turned out to be okay, but things didn't normalize again till 8a monday morning when the wonderful, wonderful nurse jackie was again in charge of nikolas.  he had a good day, monday.  dr. stefan had moved him from dilaudid to oxy, which seemed to do a world of good.  his pain was much lower, and post the csf repair, his dizziness and nausea were gone (as i predicted) and his head pain was nothing compared to his ear pain due to the second surgery (actually a positive thing).  of note, though, when they came in to take his vitals monday morning, the assistant nurse expressed outrage that they hadn't been done at all the day before.  i said, "not much was done yesterday, to be honest; we saw our nurse three times in total, two of which i had to track her down."  she nodded knowingly, and angrily.  but, all in all, monday was a good day, and it was not much of a surprise when he was discharged by 10:15a tuesday morning.

dr. miller put the pressure bandage back on just in case of fluid buildup around incision, and we left the hospital with followups scheduled as follows:  friday with her, monday with schwartz, thursday with her counterpart dr, wilkinson (as miller will not be in town this coming week).

so, as for how he's done since he got home tuesday around 12:45p:

i cannot even tell you how happy he was to be home, but his mood took a dive when he realized the house sounded different.  one thing to be in pain and deaf in one ear in the hospital - another to come back to your zone and experience it differently than you did before.  but he did his PT, otherwise taking it easy, and though we had a stomach incision scare that evening (came to nothing, of note), by wednesday he seemed to be feeling good.  reporting pain in both ear and head, but again, ear being worse - a positive.  and he felt good enough to engage with his visitors, to go on several walks (one of them quite long), and to otherwise be his spunky self.  as dr. miller predicted, he was and is walking perfectly normally, though it's tiring.  (his PT tuesday morning before his release said he'd never seen a patient walk so well so soon post-op.)


however, his activity wednesday caught up with him thursday, so he spent most of the afternoon lying down, reporting head pain.  this had me worried about a second leak (and i'm still worried about it), but no clear signs.  thursday morning the pressure bandage he was sent home with came loose enough that i called dr. miller, and she told us to just remove it.  afterward, i noticed it was swollen behind the incision, and he reported numbness and slight pain.  further, his ear was standing further out from his head than it was after the first surgery.  i brought this up to her at our followup friday, and she said that although the incision looked good and there was no fluid buildup, she'd prescribed bactrim just in case, which he's at the time of this writing gotten four doses of, to little effect.  i have to hope the swelling is normal, but it's difficult since it did NOT look like this after - again - the first surgery.

anyway, here we are on sunday.  the incision looks little better today than it did yesterday, and the ear is visibly less swollen.  he still reports numbness, though. last night his girlfriend came over and he made guacamole for her (he loves cooking).

he's walking fine, and is now sleeping in his upstairs bedroom (at his insistence).  walking in the dark doesn't seem to be bothering him as much as i'd anticipated, though we do keep some ambient light around to help.  he appears to be growing accustomed to the SSD, though i could tell that he was frustrated watching 'the big short' last night (really, why is the dialogue recorded under the background noise??  i know we're supposed to feel like we're eavesdropping, but even *I* had a hard time hearing it, and so recoiled in horror and anger throughout the film, knowing he was struggling with it even more than i; at one point i looked over to see his face grimaced, and told my husband to turn it off).  likewise, my husband hasn't quite seem to 'gotten' that he can't have the tv blaring and talk to nik over it, but i'm working on that with him. 

on the pain front, nik is reporting 'okay' ear pain and 'okay' head pain, though when i ask for the numbers, i get 5 for the former and 7 for the latter, not something i'm happy about, to be honest, but comparing today to a week ago, i'm not sure if the numbers are REALLY that high, or if he's merely gotten used to it.  i hope it's not the latter, though i suppose it's better than NOT being used to it.

for the most part, oxy and norco seem to be managing his pain quite well, but i'm terrified of what happens when the scrips run out.  though i will say he only asked for/accepted one norco yesterday (between oxys 12 hours apart), and this morning took ibuprofen instead of norco, so i'm hoping that's progress.

i feel like i'm forgetting stuff, so if you have questions, by all means, ask.

i'll try to upload a photo gallery in the next 36 hours.  i meant for it to accompany this, but honestly, i'm just too burnt out to do it now.  once i have, i'll either comment here with a link, or start a new post with a link to this one.

in summary:

i'm incredibly proud of my son, and despite frustration with the back office at house and the weekend nursing staff at st vincents, i could not ask for more in the realm of the actual physicians who ministered to him.  i truly like drs. schwartz, miller, and stefan as people, and if i had to do it over, i'd choose this team again.  we ARE only 12 days post first-op and 8 days post-second, so there's still a long road, and i'm sure there are things my son isn't sharing with me (he's very independent and already tired of my hovering), but overall:  first hurdle overcome.

oh!  he does still have some facial weakness post op, and i worry that he was tapered off the steroid too soon (and due to HMO cannot see dr. stefan again without a few hoops, though i may try to jump through them), but it DOES appear to my layman's eye to be temporary (to an extent), and it's not really noticeable to anyone other than me, him, and his dad.  i hope it doesn't worsen, but as it is right now, it's not awful, even if it didn't improve.

i'm sure i'll have more commentary/questions/freakout posts as things progress, but i just wanted to share where we are today.

[mcrue]

Sounds like he's been through a lot. Hopefully he will experience a rapid and successful recovery from this point forward. I can certainly relate to your frustrations with some in the medical field...be it with a hospital or nursing home, or with certain doctors/nurses.

It's only natural to "second guess" if we made the "right" decision. Your son is young and appears to have a great prognosis, thanks to his caring family and meticulous planning. Milkshakes for everyone!

[ANER]

Thank you for your lovely, thoughtful post on your son's experience through your eyes.  Although I am much older than your son i'm certain my mother worries just as much.  In fact, when I told her I had to text her because I couldn't bear to see "that" look on her.  You know the look when your first tell someone, yah that one..  Anyway, any follow up you can give on his recovery would be great.

Nate