Recovery Day 2 -- Fail Whale

After a good night's sleep last night, I continued the Sleeping Beauty trend through most of the morning, confounding many of the various medical team visitors that came by in the morning intending to work with/on me and finding some sort of hibernating, mumbling creature in my bed.

My lucky epidural/Valium/nubain combination certainly did treat me well through the night and this morning, but when I finally woke up midday I had two problems. One was that my shoulder muscles, having been kept in the same position for two days and nights straight (because of IV lines and injury), were stiff and very sore. The second was that Phlebotomy had not been deterred and was waiting for me to wake up. Seriously? Are they playing some sort of sick darts game with me? Didn't I just give them blood samples yesterday? I was unable to feign sleep well enough to discourage them, so they stuck me again and again and again until they they finally found a vein that could give them what they wanted.

By now all the evil forces amassed against me had noticed that I'd awakened and so I was cheerfully told it was time for my bed linens to be changed. Last time I had checked, I had been lying quite immobilized on my bed linens, tangled up to several types of wires, hooked to a CPM machine, and basically inextricably attached to my bed and, therefore, its linens. I also did not particularly care that my linens were at this point a day-and-a-half old. I don't even change my sheets at home every day and a half. But the hospital cared, and so I was -- strongly against my will, I note for the record -- forced to have my linens changed.

The linen change operation can best be pictured if one imagines how one moves a large sea mammal -- an orca, say, or a manatee -- from one tank to another at Sea World. A big sling is positioned under the enormous beast and then is hoisted; the animal is lifted, fins flopping out to the side, pulleys straining, as the tank is hurriedly changed or cleaned beneath the teetering mass of blubber. Finally, thankfully, the hovering sense of disaster is abated as the humiliated and panting celaphopod is lowered back down to its bed -- I mean, tank.

My CPM machine was not replaced after the linen change, since I'd had the machine on and constantly running since immediately post-surgery. This meant that my operated leg was in a new position and that a pressure sore that had, gradually and, at the time painlessly, been created by the support bar of the CPM machine against the underside of my thigh, had begun to make itself known as the sedation masking it wore off. Quickly and excruciatingly.

Physical therapy came and did some mild exercises with my legs and feet; I ate some broth. All the while the pain from my new positioning increased, the pressure sore began to liken a red-hot poker pressing into my thigh, and, somehow, the epidural began to decrease in effectiveness (despite being raised from 8 to 10 by Dr. Millis last night.)

By late afternoon I was probably at a seven or an eight on my pain scale, moaning and crying and repeatedly pressing the nurse call button to beg hysterically for help or a shotgun. Unluckily, my mother was out taking a walk at this point, so I was literally alone, sobbing into the abyss and the nurse call walkie-talkie.

The pain began above my hip, probably where the screws entered my iliac crest just below my waist on the right side. The pain widened and deepened at the hip joint itself, illuminating all the different moving parts aching inside the joint and around it, including the muscle along the outside of the hip joint. The pain then shot down the right side of my thigh and flared out again near the lateral tibial head, narrowing and dissipating down the lateral side of my right calf. This pain was steady and totally consuming, and I couldn't figure out why it would radiate out so far from the hip itself.

I cried and moaned and hit the call button again and again. Finally, FINALLY, a nurse came and brought Pain Services, who discussed my pain and did some sensory tests to determine the coverage area of my epidural. The Pain Services team eventually decided to raise my baseline epidural to 12 and to give me a jump start on pain relief by injecting a small dose of lidocaine directly into my epidural line. Although it was not instantaneous, the lidocanine did the trick and provided me with possibly my first (and only) pain free 90 minutes while in the hospital.

Once the lidocaine kicked in and my biggest crisis was resolved, some of my smaller irritations could be addressed. I'd been feverish all day, so my body temperature had been fluctuating between chills and hot flashes. When I was hot, I was dripping sweat and had to be packed around with ice packs all over me; when I was cold, I was swathed in blankets and chattering my teeth. When I was hot, my back would itch and drip and feel like an inferno pressed against the pillows and the bed, and I would stuff as many ice packs as I could between myself and the bedding. My fever hit 102 at its highest. My back itched and overheated horribly, only worsened by the enormous ace bandage dressing wrapped around my incision as well as my entire abdomen.

Needless to say, this was an incredibly uncomfortable day. I was in pain and/or discomfort almost constantly, as well as woozy for long portions when I was on Valium to help me relax and Nubain to help relieve the itching.

At 6:30pm Dr Millis came by to remove the large ace bandage dressing and replace it with much smaller dressing over the incision alone, which relieved some of the abdominal discomfort, but not the horrible itching and damp heat on my back. I saw my incision through the stitches and steri-strips -- it looks about five inches long and not horribly disgusting. Dr. Millis said my fever was normal. He looked at the pressure sore from CPM machine but declared it didn't look that bad, which was annoying since it certainly continued to *feel* that bad.

I ate my first food (some bites of scrambled eggs and a few crackers) so I'd be able to start switching to oral medicines in the next day or two.

I would have to say that today, Wednesday, was one of the very worst days so far, and that I am surprised and disappointed that I was so very uncomfortable and painful several days after the surgery. I didn't expect the recovery to be pain free, but I certainly did not expect the seemingly increasing level of durable, multivalent misery that I would be still be experiencing several days following the surgery.

Recovery Day 1

Last night -- the night after my surgery day -- was rougher than I thought it would be. Despite being exhausted after the surgery, I kept being snatched from the edge of sleep by various distractions, both human and electronic. Nurses came often to check my vitals, and oversensitive monitors periodically became convinced that I was no longer breathing, which of course sounded an emergency alarm that brought people running to my unnecessary rescue. My sleep was fitful from all the interruptions, and uncomfortable because of the itchiness brought on by the epidural medications and the all the contraptions stuck to and moving on me.

In my bed, I was sleeping with two IV lines, three monitor leads, a pulse oximetry meter, rhythmically inflating compression leg wraps on both lower legs and my entire right leg in a continuous passive motion (CPM) machine cycling my hip constantly between 30 and 70 degrees. Cozy.

The 11pm nurse shift change brought relief in the form of a wonderful nurse who gave me Nubain (for itch) and Valium (for muscle relaxation and sleep) among other delights. I slept much more comfortably after that but I wouldn't call it cozy.

This morning Dr. Sankar came to see me as I awoke, and he said I looked very well for someone the morning after surgery. Phlebotomy followed Dr. Sankar, which caused me to mar my fine looks with a considerable scowl, as they pincushioned me for some blood tests. The scowl deepened when I found out these would be daily blood tests.

Then the physical therapist arrived, which I honestly thought was a joke. Seriously, how much physicality did they think they were going to be able to get out of me in this state? A toe wiggle? Well, that was pretty much the answer. Wiggle your toes, move your ankles, etc. They did ask me to isometrically tighten the quadriceps muscle in my right (operated) leg as much as I could. It was a strange sensation to be sending my leg muscles signals that simply did not seem to be received. The therapist laid her hand on my thigh and said she could feel my muscle contracting, so my efforts were not unheeded, but I was still numb to any response at all and the non-feeling was quite bizarre.

I spent most of today sleeping, probably making up for my poor night's sleep last night. In the evening the anaesthesiologist checked on my left elbow injury -- I still couldn't use it to help lift myself using the trapeze (the pole above my bed that can be used to lift and adjust the body using the arms) and I still did not have full extension or flexion. The pain was tolerable if I kept the elbow relatively still, but it was obviously a concern for the surgery team.

Dr. Sankar also came by in the evening to remove my "drain," a pair of tubes that had been left in the wound and led out to a collection pouch outside the body to drain away blood and fluid from inside the surgery site. The drain reduces swelling and aids in healing, and had been emptied several times since I'd gotten to my room on Monday night.

When Dr. Millis came up at 7:45pm, my last visitor of the night, he asked what my pain level was in my hip. I told him honestly that it felt like I had a machete driven through my groin. He thought this a sufficient enough reason to increase my baseline epidural from 8 to 10. The machete became a steak knife and the night passed relatively peacefully.

The Surgery Itself

My mother and I made the chilly, five minute, pre-dawn walk to the hospital. Right on time at 6:00am I made a point of bounding up the hospital stairs towards the Admitting department, ticking off my last "last" before surgery. In the Admitting area there were three other patients with their families checking in for surgery. All of them were kids, except for me, which I guess is to be expected at a children's hospital. They were, alternatively, sniffling and clutching a teddy bear, silent and affectless, and moderately cheerful. I was actually a bit jocular and excited, which seems an utterly inappropriate mood with which to approach major surgery.

By 7:00am we were all in the pre-op holding area, a room lined with curtained off alcoves, like stalls in a barn. In my "stall" I changed into my surgical "johnny" gown and met with the anaesthesia team. They reiterated everything that had been discussed about anaesthesia during the pre-op meeting in February.* In some PAO blogs I'd read that some patients had experienced problems with their epidurals where the wrong leg was numbed, or the epidural did not work at all. When I mentioned this to the anaesthesiologist, his answer seemed to be something like: "yes, that happens sometimes; it is tough to pinpoint the right spot; we are actually working blind in there because we are not going to bring in a fluoroscopy for a simple epidural, but we do these all the time so it should be fine." Oh, OK, now I feel better.

Dr. "Woody" Sankar came to sign my hip and Dr. Millis, sporting a green St. Patrick's Day bow tie, stopped by to answer last minute questions. He estimated he would be done with the surgery by 1:00pm. After the doctors left, the anaesthesiologist gave me "something to relax" through my IV -- I don't know what it was but it hit me almost instantaneously.

Quickly thereafter, at 7:45am, I was wheeled into the operating room and my mother was taken into the family waiting room. I didn't have my glasses on anymore, but through the fuzz I saw that the OR was full of a lot of people, a lot of tables and a lot of stuff on the tables, everything in the blue/steel/white color palette that looks so good with my complexion. I also remember thinking Dr. Millis' surgical cap was not at all like the caps the surgeons wear on Greys Anatomy.

My gurney was wheeled close to another bed, which had been piled with pillows or cushions of some kind, and I was told to swing my legs around so I was sitting on the side of my bed resting my shoulders, forearms and head on the cushions. "Try to make your back into a 'C' shape," the anaesthesiologist said.

Wait just a minute, I thought. This is the procedure for getting an epidural. I am not supposed to be conscious while getting an epidural. I am not supposed to remember this part. I am way too conscious for this. Meanwhile people behind me are telling me what a great spine I have and what a wonderful "C" shape I've made with it, and Dr. Millis and his strange surgical cap are right in front of my face talking about things completely unrelated to how overconscious I am during this epidural placement. Dr. Millis is holding my hand and the man behind me is saying "this is some local anaesthetic, just a small pinch," and I recoil from the not-small pinch and am told to hold still. At which point I think, oh God, this epidural thing really going to blow and I am far too conscious!!, but then it just a bit of pressure and it is done. The man behind me asks me if it tingles on the right side or the left side of my spine and I tell him it is the right side and I am conscious enough to know and be relieved that the right is the correct side for this epidural to work.

So then many hands help put me on my back on an operating table, and Dr. Millis puts this fleshy plastic face mask over my nose and mouth and I remember he was talking to me and holding my hand and I was frustrated because I wanted to answer but I couldn't because of the windy face mask. And then I was gone.

Since seeing me off by the operating room door, my mother had been waiting in the family area. At 9:30 she was told that all was going well and that my surgery had begun at 8:45. By 11:00am the doctor had begun making cuts into the bone but had not inserted any screws yet. By 12:30pm the doctor had discovered the superhuman bone density of my skeleton and was still cutting bone and was now estimating two more hours of surgery. By 3:20pm the doctor was almost finished and was closing the incision, but the nurse said he would not come out to talk to my mother until I was awake and moved into my bed in the Post-Anaesthetic Recovery Unit (PACU).

Meanwhile, I was coming to in the PACU in what should have been relatively pain-free awakening from general anaesthesia. Unfortunately, during the surgery my left arm had been placed in a position that normally would have been comfortable but in my case was not. The left arm had two IV lines, an arterial line and a blood pressure cuff on it, and was stretched out straight across a table, supported with pads and gel packs. Despite all those protections, my left elbow somehow hyperextended, causing straining or microtearing of the tendon attaching my biceps muscle to my radius.**

I can't even remember if I had any hip pain at all when I woke up because all I remember is excruciating pain in my left elbow. My cries utterly confounded the PACU staff who were (understandably) under the impression my hip was my most likely pain locus. All I recall from this period in the PACU is whimpering and moaning and leaking tears as people tried to figure out what was wrong with me. No conclusion was ever really reached, but I was given morphine anyway, which helped a little.

At 4:10pm Dr. Millis came out to the family waiting area to speak to my mother. He said the surgery had gone well, and that I was out and awake and feeling no pain in the hip, but that I was feeling pain in my elbow. He also mentioned that I had very strong bones, which was why the surgery took longer than expected. Dr. Millis showed my mother films taken during the surgery as the bone was cut, moved and after the five screws had been inserted. The doctor showed a comparison of my pre- and post-surgery hip socket angles -- my pre-surgery angle was 90 degrees and the goal for the surgery had been to increase the angle to at least 110 degrees. The post-surgery angle was actually 114 degrees, so Dr. Millis was obviously quite pleased with that outcome.

You can see the increased coverage of the femoral head ("ball" of the joint) in the image to the left. Compare my left and right hip socket coverage and it is obvious how much more of my right femoral head is in the socket compared to the left femoral head. Obviously all my new hardware is quite visible as well.

The doctor also mentioned that he had not used all of the pints I'd autologously donated prior to surgery, since most of my blood replenishment during surgery came from the cell saver system. But he would probably be using some of my donated pints to ease my recovery in the next few days.

At 5:30pm my mother came to see me in the PACU. I was already on morphine for the elbow pain, so my hysteria had lessened slightly at this point. She fed me ice chips while I kept trying to clear my throat of the breathing tube feeling. While she was there Dr. Millis and Dr. Sankar were adjusting my CPM machine, which I would use for the next few days.

At 7:00pm, twelve hours since I'd first hit a gurney, I was wheeled into my room on the 10th floor. Luckily, I had a private room with a lovely view. I didn't spend much time enjoying the view, though, as I was exhausted -- from the surgery, the sedation, the pain, the morphine, everything. I think I was asleep by 8:00pm.

* All quotes and dialogue attributed to medical staff at Childrens' Hospital are taken from the memories of my mother and my(drugged)self, and should not be considered direct quotations or perfectly correct paraphrasing.

**This is my diagnosis, not a doctor's. But I still think it is right.

Surgery Day - Morning

My surgery time is 7:30 this morning; I have to be at the hospital at 6:00am.

Yesterday my mother and I drove up to Boston; we stayed in a hotel last night. My mother will be staying there for the week. (For others having Boston surgeries, it is the Best Western Longwood, a block or two away from most of the Longwood Medical Area hospitals, including Childrens', Brigham & Women's, Beth Israel Deaconess, etc. There is a special rate for relatives of hospitalized patients.)

I did eat a smallish dinner last night. The pre-surgery eating guidelines allow you to eat up until midnight the night before the surgery, but they recommend having only a light meal. Post-midnight I can drink water until three hours before the surgery, i.e. until 4:30 this morning. Which is basically when I woke up from a night of pretty fitful sleep and could not fall back asleep. So I did get about a liter of water in me just under the wire.

I did not bring very much with me for this hospital stay -- I can't imagine I will need much that won't be provided by the hospital or available on site. (There is a CVS/pharmacy in the lobby of the hospital, and since Longwood is a neighborhood of hospitals and medical facilities, anything I could need is probably available within a 5-block radius.) My packing list included:

- glasses, contacts & solution
- my favorite sheepskin slippers
- cardigan sweater
- reading material
- laptop
- gym shorts
- pyjama pants
- bathrobe
- crutches (which I had leftover from a sports injury a couple of years ago)

Even that seems like a lot given that I'm not going to be able to get out of the bed for several days, much less change out of the hospital-issue gown I'll be in through and after surgery. The shorts/pants, bathrobe and slippers are really for later in the week when I'll be out of bed taking my first steps with the walker and then crutches.

This morning my first stop will be Pre-op Admitting to finalize my admission to the hospital (most of the admitting paperwork was done in February at my Pre-op visit). The nurse there will take my vitals, confirm that I have complied with all the appropriate medication/food/liquid restrictions required in the weeks and days before surgery, and get me changed into my surgery attire.

Next I will go up to the surgery floor, where I will meet with Dr. Millis and the anaesthesiologist. Dr. Millis will sign my hip to indicate which surgeon I belong to and which hip he is to operate on. (I suppose all patients look alike when supine with surgical bathing-caps, breathing tubes and billowing pastel gowns, so one must take more basic measures for identifying one's patients -- like writing on them with Magic Marker. You know there must be a lawsuit or two behind that rule.) Next the anaesthesiologist will start the IV, and hopefully that is the last thing I shall remember.

So now it is time to head over to the hospital. I feel tired and hungry and cold, and everything else you feel at 5:45am on a March morning. I have a bit of a headache; my right hip is at about a 1 on my pain scale. My left hip is at a zero today.

I am not nervous per se. Mostly I sense the culmination of an odd feeling I've been having all week, ticking off my "lasts" before the long period of recovery I will have ahead of me. Last tennis match, last day in the office, last subway journey, last night in my own bed in NYC, last walk with the dogs at my parents', last time driving a car (although the 3.5 hour drive up to Boston may have lessened the blow of that particular "last"). Today I will walk into that hospital feeling healthy and strong, carrying my own things, pushing through the revolving door myself, and bounding up the stairs to admitting in what will be my last "bounding" for a long while. It is quite a juxtaposition with how I'll be in half a day's time.

But my hips are built the way they are built; this surgery is a necessity. People have more complicated, emergent, painful, dangerous, experimental surgeries every day; some come out with outstanding results, some come out with complications, some don't come out at all. I have done what I could to prepare for this, I have chosen a fantastic surgeon and an excellent hospital; there is nothing more for me to do now other than trust the experts. The ball (of my hip)* is in Dr. Millis' court now.

*(Sorry, I just couldn't resist.)

Pain Scale

There is, apparently, no objective pain scale to be found on the Internet. Instead there are many angry nurse blogs complaining that there is no objective pain scale. And that patients who are clearly not in agony still say "10" when asked what their pain is on a scale from 1-10.

In order to avoid confusion on this issue, below is the pain scale I will be using throughout this blog.* Maybe I will post it by my bed in the hospital so the nurses tending to me can also benefit from its clarity.

0 - No pain.

1 - Conscious of occasional discomfort in the affected area, but discomfort is tolerable and does not inhibit daily activity.

2 - More steady discomfort in the affected area, however still tolerable and not inhibiting of daily activity.

3 - Some pinching, throbbing or sharper spikes of pain in the affected area, perhaps causing a brief wince. Discomfort still tolerable but beginning to make you think about favoring that area while moving/bearing weight on it.

4 - Overall higher level of pain. Activity of the affected area limited in an effort to lessen pain. Mildly distracting but non-strenuous daily activities like talking and reading are still possible.

5 - Pain level has become distracting, causing irritability when talking, inability to concentrate on reading or other activities. You are definitely not moving/bearing weight on the affected area. Mild sporadic profanity begins.

6 - Now you are getting pretty pissed off about this pain. Where is the f'ing nurse?!

7 - Tears, gasps and desperate mewing in between sobs. Mommy evoked.

8 - Wailing and white knuckles. God(s) evoked.

9 - You begin to think you have chosen the incorrect hospital for appropriate pain management. Lawyer evoked.

10 - Someone has lit your body on fire and is now attempting to put it out by beating you with track shoes. (Flip-flopper.)

*I reserve the right to alter or amend this pain scale if it turns out that writing it while not in pain, pre-surgery, on a Friday afternoon after lunch, has led me to grossly underestimate and/or mischaracterize any or all of the aforementioned pain levels.

Last Tennis Match

Five days to go.

Tonight I played my last tennis match before surgery. This time last year I was playing tennis two or three times a week, and was in the process of signing up for the three leagues I played in last summer, including one that I captained all the way to Sectional finals.

In the last couple of months I've played tennis maybe once every two weeks, with mixed results in terms of post-match pain. The decrease in my tolerance for a vigorous tennis match has definitely been one of the most saddening manifestations of my hip problems. I am hoping this surgery will bring me back to the courts as frequently and as capably as ever.

That said, of course I played some of my absolute best tennis tonight. Always good to go out on a high note.

My preparations for surgery are pretty much complete. I am on track to tie up all loose ends at work by Friday; I am on my way to being packed for what I expect to be six weeks away from my apartment in the city. I have not bought any of the equipment recommended by many other bloggers -- the grabbers or the sock donners or the bath chairs. I figure I will get (a parent to get me) what I need if I need it. I already have crutches from hurting my knee two summers ago. So my bag is mostly full of books and lounge pants.

My hip pain has been pretty minimal these last few weeks. It comes and goes, sometimes not seeming related to my activity level. During tennis yesterday I felt discomfort in the back of my right hip, or maybe in my lower back on the right side as a result of some compensation for the right hip. I also felt a sort of soreness on the outside of my hip, which is unusual. And afterwards of course the anterior labrum (basically the front of my hip, right at the crease when I lift my thigh) gave me some pain, which was to be expected.

My left hip has also piped up with a few twinges in the anterior labrum a few times this week. But none of this pain has been at all severe -- usually about 1 to 2 on a pain scale -- so it hasn't inhibited my activity more than to warn me that I should think about easing up.

Mentally I've been mostly unaffected by next week's events, other than a gradually receding paranoia that I will suddenly be felled with a cold and all my preparations and planning will be tossed out the window as my surgery is postponed for months and months. But as the days count down and I remain healthy, even that worry is fading.

Two Weeks to Go

Today was my third and final autologous blood donation prior to the surgery. I was glad to see that my iron-rich diet and iron supplements had raised my hematocrit level to 13.4 for this donation. My blood pressure was low, though: 90/60. My blood pressure has been lower and lower at each blood donation. I'm not sure why, or if I should be worried about it.

In any event, today's blood donation was much better than my donation during my pre-op visit to Boston. Today I was at the New York Blood Center again and I had the same technician, Skip, as I'd had during my first autologous donation -- the guy knows what he is doing. The whole process is as quick, efficient and painless as puncturing a vein and draining a pint of blood can be, I suppose.

I have also learned my blood type as a result of these autologous donations -- I have B+, just like my mother. And my secretary, for that matter. Strange to think I have gone 29 years of my life without knowing my own blood type. Only 10% of the U.S. population has B+ so it is even better that I have three units of my own blood standing by during the surgery.

Today's autologous donation was the last preparatory appointment I had on the books prior to surgery. Now I just wait two weeks, continuing to keep as healthy as possible, and continuing with iron-rich foods and iron supplements to get my hematocrit back up in time for the surgery.

I also found out today that my insurance (Anthem Blue Cross) has authorized the surgery as "medically necessary," which is an important step in having the entire expensive procedure and inpatient costs covered. All the contact with the insurance company was handled by the hospital, so luckily I was spared much of the wrangling that some women have had with their insurance companies over this surgery. At least for the time being.