One year hipaversary

One year ago today Dr Mayo surgically dislocated my right hip to clean up some damage (torn labrum, remove a sort of spur on the femoral head, and shave down the femoral neck). Five days later he performed a PAO to align my hip socket in order to make the joint last longer.

Much has happened since then, and now it's all done. PT ended in August, and I won't see Dr Mayo again for another year. When I left Mayo's office, I was saying goodbye to new friends.

Everything looks good. I neglected to get copies of the x-rays from my last appointment a few weeks ago, but they look the same as the final x-ray from my cleanup surgery, so here you go: before and after. Notice the cloudiness around the joint is gone.

Before

My range of motion is good--less than before, but pretty good. My hip flexion (bending forward) is still a bit limited, but it does bend a little more than 90˚ so it's good enough. The joint itself feels great, better than the left side (which recently has started hurting), but there is still some tightness to work out. I can sit cross-legged but not for too long. A patch of skin the size of my hand between the incisions is still numb. And thankfully that rash has not returned.

After

I've done quite a bit on my new hip since the cleanup: walked all around the San Diego zoo, hiked 5+ miles in a stand of old-growth fir in the Olympic mountains, and biked a few miles on the road and many more on the trainer. Driving feels mostly normal, but I do have a bit of trouble moving my leg to position my foot when switching between the accelerator and the brake, and I can't sit as long as I used to.

The next major thing I'll do with my new hip is move to Pittsburgh for my new job.

A lot of water has sure gone under the bridge in the last year! Thank you God for taking such good care of me--and Krista!

Post HO-removal two-week followup

Monday we went in for a two-week follow-up. Renee and Dr. Mayo checked my incision (looks good), peeled some of the glue off, clipped the ends of the sutures (Dr. Mayo used nylon instead of the dissolving kind this time, in case it was causing skin irritation), and checked my range of motion. I get close to 90˚ flexion, and rotation is improved, though significantly less than my left leg. I have a lot of stretching to do, to make up for almost eight months of relatively little activity.

To the right is a picture of the screws (or replicates) that Dr. Mayo removed. The two little ones were replaced (I think in my iliac crest), so counting the two in my trochanter from the SDH surgery I still have four screws embedded.

Since I'm active again, Renee said I could ditch the TED hose and the last three Fragmin shots. I'm still on meloxicam until I finish out my 30-day supply.

I got orders for PT, with the same no-straight-leg-lifting and no-active-abduction restrictions, until my next appointment four weeks from now. Dr. Mayo gave the OK to drive if I feel safe. Best of all, he said I could ride my bike on the trainer, but not to power with my right leg.

So last night, for the first time in about eight months, I set up my bike in the kitchen and went for a ride. It was a challenge to get on the bike, since it's a road bike (and therefore tall) and mounted on the trainer it's a couple inches taller. I ended up stepping on a chair to get high enough to get into the saddle. But once I got on, boy did it feel good! Very natural, enough that I had to be careful not to power through with my operated leg. I tried to take it easy and just spin, and ended up riding 11.5 miles in 45 minutes. My cardiovascular conditioning is weak; even though I was taking it very easy, after 30 minutes my stamina was dropping fast. I don't think I overdid it because today my hip feels about the same as it did before I rode. Very encouraging!

My hip is already much more flexible than before the HO removal. It feels tighter than before this surgery but is loosening more and more each day. I fit behind the steering wheel much more comfortably than before, but I'm not quite 100% because the no-straight-leg-lifting restriction and the corresponding weakness of that muscle make it hard to lift my leg to move it between the gas and brake pedals. But good enough that I'm driving the boys to school in the mornings.

The swelling has gone way down, to the point that my operated hip looks about the same size and shape as my other hip.

I continue to be amazed at how little pain I've had. I haven't needed to take anything, or even thought about it, even in the hospital. I'm eager to get past all the post-op distractions so I can get a sense for what it's going to feel like long-term.

Thank you God for such a smooth recovery!

Day 9 post HO removal surgery

My hip feels great. I can do everything for myself. My range of motion is greatly improved. Flexion is pretty good, good enough that I can put socks on the normal way, even my TED hose. External rotation is excellent and unstrained; internal rotation while pretty good still feels a little tender.

The joint feels very stable, and if I'm not moving there's no pain. The muscles have healed up enough so that I need to remind myself not to overdo it. Every now and then I'll move a certain way and be reminded of Dr. Mayo's no straight leg-lifting and active abduction restrictions.

I'm using one crutch to even out my gait. I can walk without a crutch, but with a limp.

When I walk there is some muscle pain, which is probably related to the muscles Dr. Mayo had to detach, but it decreases every day.

At first it was painful to cough, but that pain is almost gone now.

I can comfortably sleep on my back or on my non-operated side. I can use a regular toilet without having to have my leg sticking out straight in front of me.

The bad:

My leg has started to swell and looks maybe 10-15% larger than the other leg. Also, it is bumpy and itchy at times. I remember going through a phase like this last time; I hope it passes quickly. I'm trying to go for walks more often to get that stuff broken down and pumped out.

My incision is red in places and my hip is swollen somewhat but not enough to prevent me from wearing pants. I'm hoping and praying that I can avoid infection and dermatitis.

One thing I've learned through these surgeries is that I have very sensitive skin. My belly has broken out with a rash where something was taped. It's possible that the itchiness and bumps on my leg are a delayed reaction to the nasty green stuff they scrub it with.

I do not cease to be amazed at how our bodies recover after being (carefully) hacked open and screwed, sewn, glued, and taped shut.

Days 1-3 post HO removal surgery

For those of you who are interested in all the little details:

My time in the hospital was uneventful (if you can call being flayed and chiseled, then screwed, sewn, glued, and taped back together uneventful). The most remarkable thing to me was how relatively little I hurt. I didn't take any pain medication by choice during the four days I was in the hospital, and other than during the surgery itself I was only given pain medication three times: one hit on the PCA to test it after they hooked it up (2 mg dilaudid), two Vicodin the next day before PT came at the insistence of the nurses, and two more Vicodin the following day at the nurses' insistence (though PT didn't end up coming until nine hours later, when it was probably no longer effective). The next day I insisted I didn't want anything, so I haven't taken anything since the third day.

So what did it feel like? Of course right after surgery I was in a fog with all sorts of sensations, including nausea for a few hours (puked once). But after that wore off, I didn't hurt much just lying in bed. When I had to move I felt very sore but I didn't have that bundle-of-dry-sticks feeling of fragility inside my hip like after the PAO. Standing up I could feel a lot of muscle soreness and exerting the muscles was somewhat painful. But the muscle pain diminished noticeably every day.

The first time PT came they sat me on the edge of the bed for a few minutes, then stood me up. Cumulatively I was upright for about five minutes before I began to feel light-headed, which was a big improvement over last time. Opting out of the epidural was a good call, since the epidural made me very light-headed (it results in the blood vessels in the legs enlarging, causing blood to pool in the legs, with the result that not enough blood is left in the head). I experienced some light-headedness one other time, but that was all. I think it was the second day that I got up to use the toilet, and felt so good that I went to the sink to wash my hair and generally wash up, 20 minutes or so, all under my own power. We were very encouraged by that.

Lying in bed got to be uncomfortable. The second or third night I got tired enough of lying on my back that I worked my way out of the CPM machine and onto my non-operated side, where I slept for an hour or so. That made a big difference.

The regimen is very much like for SDH and PAO:

• green leg from surgical scrub (including Margie washing it off herself again, surprised that no one else had)
• TED hose
• Plexi-pulse
• CPM machine
• two surprisingly long drains hooked up to a Hemovac (came out the third day, I think)
• catheter, out when you're ready (the second day, I think)
• IV drip
• PT once a day
• blood draws in the middle of the night
• daily Fragmin shots
• no straight leg-lifting and no active abduction
• Dr. Mayo and/or his PA popping in once or twice a day

I did lose a fair bit of blood, enough so that they hooked up a cell saver during surgery and recycled 600 ml of my own blood, but I did not receive a transfusion. I ended up getting three bags of IV fluid (3 liters) before they unplugged me, which was enough to make me puffy but not to the point where I felt like my eyes were bulging, like last time. I felt a quart low or so; the first few days after surgery my blood pressure was low (90s over 50s) but eventually came up to 110 over 70 or so.

Even though I wasn't using the IV the last two days, the nurses still wanted to keep it in for quick access should the need arise, so I ended up having it in until the morning we left.

Dr. Mayo said that normally after re-opening an incision he would excise the scar tissue before suturing it up again, but he decided not to. Perhaps my skin was damaged somewhat by using steroid creams for months on the dermatitis. In case my skin was reacting to the kind of suture he used last time, he used nylon, the ends of which are hiding under the tape. So maybe I'll end up with a killer Frankenstein-style scar.

(You can see the effects of the dermatitis in the brown, pigmented splotchy area near the visible drain hole in the picture to the left.)

Dr. Mayo had me on a hip CPM this time, which I liked much better than the knee CPM. It was much easier to get in and out of, and it didn't rub my heel (last time I got an especially nasty pressure sore on the heal, in part because of the rubbing). My hip felt tight as the machine approached 90˚ but it was not painful.

In addition to radiation therapy I'm on Meloxicam, in pill form once a day after breakfast. It can have some nasty side effects and needs to be used carefully in conjunction with anti-coagulants like Fragmin. I'm eager to get off both. I've been having headaches the last few days and am wondering if the Meloxicam might be to blame.

Krista and I both really enjoyed seeing our old friends from last time: Kim, Stephanie, Pat, Margie, and many others. Thankfully I was a lot less work than last time, and we didn't have to share so many awkward and uncomfortable moments.

And of course Dr. Mayo and his new PA Renee were excellent. Dr. Mayo is careful and meticulous, two excellent attributes in a surgeon, which is why surgery was 5.5 hours (incision to suture completion, according to my chart). We always enjoy talking to them. Again, everybody in the hospital had good things to say about Dr. Mayo.

Thursday morning both Renee and Dr. Mayo came by to check on me one last time and gave the thumbs-up to go home, and by 11 am, after a stop at the hospital pharmacy, we were on the road.

I'm all screwed up

Three appointments this week: CT scan, consultation with the radiation oncologist, and an appointment with Dr. Mayo.

The CT scan was so Dr. Mayo could see how extensive the ectopic bone formation is. The consultation with the radiation oncologist was to prepare me for getting zapped around the time of the surgery to prevent new bone growth. And the appointment with Dr. Mayo was for him to analyze the CT scan to decide how he wants to go about harvesting all the extra bone. ("Harvesting" is an appropriate word considering I'm what they call a "bone farmer.")

I also brought home some pictures. First is an x-ray (taken probably in January) that shows some of the ectopic bone. All nine screws and five of the seven suture pins are visible. If you mouse over the image you'll see the ectopic bone highlighted in red, the small suture pins in green, and the screws that Dr. Mayo is going to remove in blue.

The other picture is a slice from the CT scan which shows a chunk of bone blocking the front of my hip. Mouse over to see the ectopic bone shaded red.

There are more images, but they're harder to read. The CT scan shows the extent of the ectopic bone much better than x-rays, and it turns out it's more extensive than was evident from the x-rays. It's going to take some doing to get at all the bone. Dr. Mayo is hopeful he can get at it through the front PAO incision, but it's possible he might need to go back in through the SDH incision (including slicing the trochanter again, etc.) or even a posterior incision, and possibly open the hip capsule.

So instead of this being a shorter surgery scheduled in the afternoon to fill out the day's surgery docket, this will have to be the main surgery for the day.

I'll probably be in the hospital three or four days, which seems a breeze after almost two weeks last time. Although I had a perfect epidural last time, I'm going to forgo it this time in order to get back on my feet and moving quicker. Epidurals cause the blood vessels in the legs to open up, with the effect that blood washes down and pools in the legs, which made me pass out when sitting up. The sooner I'm up and moving, the better to help the swelling go down and to avoid another ileus.

Speaking of ileus, Dr. Mayo said that mine was the first true ileus he's seen in a decade. He thinks it was likely caused by having an epidural for so long (I think it was eight days, starting with the SDH and continuing to three days after the PAO).

Next up is another CT scan April 19th for the radiology oncologist to use to craft his radiation plan, followed by surgery on the 26th. For four weeks or so I'll be back on the no-straight-leg-lifting restriction, and then I can start physical therapy for real. I can't wait to get back on my bike! And Krista's probably ready for me to start driving again.

My dad's praying for a bone-eating enzyme to clean things up so I don't need radiation or surgery. That'd be nice!

Dermatitis gone, next steps toward surgery

Dr. Mayo sent me to a dermatologist to check on my dermatitis just in case. He prescribed the same treatment as Dr. Mayo--topical steroid cream a couple of times a day. I continued to do that and the dermatitis has finally cleared up.

Last week I had a follow-up appointment with Dr. Mayo. He's satisfied that my skin has cleared up enough to take the next step toward getting the ectopic bone out. He checked my range of motion: it's still around 50˚ flexion, 5-10˚ internal rotation. He doesn't see a point in continuing to see a physical therapist at this point until he cleans that ectopic bone out.

The next step is another CT scan to map out the ectopic bone, a month from now. I'll also have a consultation with the radiation therapy folks regarding the single, low-dose of radiation they'll give me at my next surgery. Then I meet with Dr. Mayo to see what the CT shows. Thankfully, all those appointments are scheduled for the same day.

Then a month or so after that--likely sometime in April--Dr. Mayo will go back in and remove the ectopic bone and most of the screws. I have nine screws in my right hip, and seven suture anchors. The anchors stay, but I think he can remove as many as five screws through the PAO incision; two will be replaced as he'll need them to secure a chunk of bone that he needs to remove and replace again. If he needs to reopen the SDH incision to get all the ectopic bone then he'll remove the two screws in my trochanter. So best case I end up with two screws remaining.

Keri located some more x-rays (intra-op from the PAO), but we have yet to find the digital photos for the SDH. Evidently the machine that handles those doesn't talk to Multicare's network, so a radiology person has to upload them manually. She's doing her best to track them down. I'm very curious to see them.

My hip feels pretty good, considering. The joint doesn't hurt, just the tight muscles, and of course my range of motion continues to be limited. I still can't drive comfortably. But some things that hurt before surgery don't hurt now, and my hip no longer aches when I lie in bed at night. It really is amazing to think that the body can sustain such trauma and heal so well. Of course it helps that the trauma was intentional and therapeutic.

I can't say enough good about Dr. Mayo. I'm very grateful to have such a capable, conscientious hip virtuoso working on my hip.

Four-month check-up

Right after we got back from Colorado I went in for my four-month appointment with Dr. Mayo--a bit early to check up on the cellulitis. By chance we got to see Terri again, and she seemed to be recovering swimmingly, as usual. She ought to be the PAO poster child.

After the usual x-rays Dr. Mayo checked me out. He says I have about 40˚ of hip flexion (instead of a normal 100-110˚) and still almost no internal rotation. The x-rays don't show the ectopic bone to have spread much more than before, but it doesn't show up that well with this kind of x-ray. A CT scan will be necessary to determine its extent.

But he said no CT scan, bone-cell zapping, or surgery until my skin clears up, which it now mostly has.

This time I got a copy of the SDH x-rays, of which one is posted here for your viewing pleasure. This x-ray was taken at the end of the SDH surgery, before the PAO. You can see the two long screws he used to hold the slab of my trochanter in place, and seven small dark spots around my joint marking the suture anchors he used to tie my labrum back into place. In the course of repairing my labrum he had to trim back a few millimeters of my acetabulum, temporarily increasing my degree of dysplasia.

They didn't have the digital photos from the SDH surgery at hand, so I wasn't able to get a copy of those. Hopefully at my next appointment, as well as x-rays post-PAO showing all sixteen pieces of metal.

Meanwhile all the travel and stairs I climbed in Colorado have helped strength my leg alot. I'm limping much less, and I can almost entirely hide the limp by cheating with my toes to raise my leg up a bit. I still don't fit comfortably in the front seat of the van, so I'm still keeping the kids in the back. After reading about the PT other PAO patients are getting, I'm going to try a more rigorous physical therapist.

This year for Christmas I got...cellulitis!

For a couple of months I've had a small patch of scaly skin on my hip between the two incisions. Seeing that it wasn't going away and knowing that another surgery is coming up I decided it was time to do something about it. Hoping it was just dry skin, I gently picked at one spot--just enough to draw a tiny drop of blood--but it wasn't peeling off like dry skin, so I left it.
The next day I went to my primary care doctor to get his opinion. He diagnosed it as dermatitus and he prescribed a topical steroid cream to apply twice a day, to get my immune system to stop overreacting.

The following day we set off on a Christmas trip to Colorado Springs. All my side of the family was meeting up at my sister and brother-in-law's, the first time in four years we've all been together. That morning I started to get congested, and by the time we got off the plane in Denver I had a full-blown sinus/altitude headache.

When we finally arrived at my sister's I looked at my hip--it was bright red halfway down my leg and halfway around my backside, hot and much more sensitive to touch than normal. I assumed it was due to all the activity of the day and figured I'd give it some time. Besides, it was the sinus headache that was making me the most miserable.

Two days later my sinus headache was diminishing but my hip was not improving, so we found a doctor nearby. The doctor and his nurse were both very interested to see me, saying mine was "the most interesting case of the day." The doctor looked at my skin and said very seriously, "I don't want to alarm you, but this could be very serious," diagnosing it as cellulitis, a skin infection. He proceeded to lay out the various options, from just oral antibiotics at best to IV antibiotics in a hospital to surgical intervention if infection collects around the hardware. But first he wanted to give me a big shot of Rocephin to see if the infection would respond to antibiotics. And he instructed me not to use the steroid cream (which I hadn't used yet anyway) on my dermatitus, as the steroids would inhibit the fight against the infection.

So after a warning about it hurting like an injection of peanut butter they jabbed two syringes of Rocephin into my backside (the good side), took some blood, and sent me home with an appointment for the next day.

The Rocephin worked--the skin seemed less hot to touch and the redness seemed to decrease somewhat. The doctor thought the antibiotics were working so he prescribed a combo oral antibiotic for 10 days. My blood work showed a CRP of 145 (with an annotation saying that a value greater than 3.0 was an indication of a future cardiac event), and my sed rate was 40.

Thankfully nothing more invasive was required. I did not want anyone except Dr. Mayo to cut on my hip, so I traded email with Sarah, his PA. She was the first to diagnose call it cellulitis, from a picture I emailed her. She was a superb help throughout the whole ordeal.

(Make a too-long story less long: leave out half a dozen visits to my surgeon, primary care doctor, an urgent care doctor, and a dermatologist...)

Now, after 20 days of Augmentin and about two weeks of using a steroid cream, the redness is almost entirely gone, and the dermatitus is almost entirely gone, leaving behind somewhat darkened pigment.

My surgeon won't operate until my skin's "pristine," which it will hopefully be by my next appointment in a couple of weeks.

Physical therapy

(Yes, I've been delinquent in posting updates. Terri's excellent posts on her PT reminded me that I needed to post about it too.)

Since I've been given the go-ahead to bear full weight, I've been doing physical therapy to loosen and strengthen my hip muscles. For the first few weeks I went into the PT office twice a week, but now I'm just doing the exercises he gave me at home.

At first it was all I could do to bear enough weight on the operated side to quickly drag my good leg forward a little bit in time to take my weight before the other leg gave out. And was my hip ever tight! I tried to be super careful not to violate any of Dr Mayo's straight-leg lifting and abduction limitations, since it would be a Bad Thing™to tear one of those muscles free. That, together with the ectopic bone mass in front of my hip socket made for a very tight joint, with virtually no internal or external rotation. But I could get around reasonably well with one crutch.

So I began PT. My physical therapist gave me several exercises to do: abduction (a sort of standing one-legged snow angel), extension (holding the leg extended backwards), and rotation (while lying flat wearing an ankle weight with the knee bent 90˚, lower the foot to either side).

He recommends holding the muscle in the stretched position for a minute or so because after about 45 seconds or so the stretched muscle "melts" and begins to relax, thus helping the muscle to stretch.

After a couple of visits he gave me a length of Theraband (a piece of colored surgical tubing) to add resistance for building up strength. I tie a loop in one end, stick it around my ankle, and anchor the other end by closing the other knotted end in a door. Then I do three sets of 10 reps of abduction, adduction, and extension exercises.

For a while a muscle deep on the inside of my leg felt very tight, so I worked on isolating that muscle and stretching it frequently. I think it's stretched out (as much as its neighbors anyway) since I'm not able to "find" it anymore.

Sometimes it feels like one of the muscles that attaches to the outside of my leg bone (to the trochanter) is more of an inflexible strap rather than a pliable muscle. It's a weird sensation. I'm not sure if it needs stretching, or whether that's a side effect of the ectopic bone tissue, or what.

After a week or so of PT I was able to waddle around with a severe limp when not using my crutch. My operated side would dip down so much when I shifted my weight to that side that I wondered if my leg were now shorter than before, but my physical therapist said it's all due to muscle weakness. (Besides, physiologically it was impossible that the surgeries I had would have that effect.) I was surprised to learn how much our muscles support us; before I assumed that muscles just move our bones, but evidently they do a lot more than that.

Now I walk with a mild limp with no crutches. What seems to have helped the most (but it could just be coincidence) is climbing stairs the two weeks we spent at my sister and brother-in-law's house over Christmas. At first it was almost impossible to step up using my operated leg, but by the end of the two weeks I was able to walk up normally without using the handrails, except for the wobbling and grunting. It feels strangely good to go uphill now, healthy, as if the exertion is getting everything all properly tightened up and aligned. I need to make sure I'm not violating Dr Mayo's limitations; I hope not because it feels good.

The rotation stretch seems to have helped a lot, and is the stretch that's the most uncomfortable.

My major limitation is still hip flexion (i.e. bending the hip into a sitting position). The ectopic bone tissue in front of my joint severely restricts how far it will bend. Every few weeks I try to sit in the front seat of our van but it just won't bend enough, which means I sit in the middle row with my daughter Eden (thankfully I don't need a car seat). I can sit in the driver's seat for a few minutes, but it's such a cramped position I can't easily move my foot from the accelerator to the brake pedal, requiring me to use my left foot for the brake. Also after a few minutes it becomes very uncomfortable. So until we can hack out that ectopic bone, I'm just a passenger.

More on that in a bit.

Week 8: full weight bearing, a speed bump

[Warning: long post]

Much has happened since my last post! Tuesday by chance we got to meet Terri, another of Dr. Mayo's PAO patients who has been super helpful. She was in for her pre-op appointment before having a PAO on her other hip--four months after a PAO on her other hip! She had the ideal recovery from her first PAO, the best recovery story I've read. She's recovering from PAO #2 as I write this, and so far it sounds like it's going as well as #1.

But I'm getting ahead of myself. An update on the last three weeks: relatively uneventful. My hip has felt solid the last few weeks, like the bone has fused enough for it not to flex when I move this way or that. I can roll onto my non-operated side in bed and lie on it for some time without too much discomfort. I can do just about everything myself, including getting in and out of the shower, getting all my clothes on (except for my right sock if it's tight). My right gluteus maximus is on vacation--it's just flat. My incisions have healed well; to the right is a picture from about a week ago. The pressure sores on my heels are basically healed.

Tuesday Krista drove me in for my eight-week follow-up appointment--eight weeks from my SDH, seven weeks from my PAO. It was good to see everyone in the office again.

First they sent me off to get a bunch of x-rays next door. One x-ray required me to spread my legs a bit and turn my toes inward, to rotate my femur inward as much as possible, but I wasn't able to rotate it at all. I was hoping that was just due to muscle atrophy, since I've been very careful to observe Dr. Mayo's restrictions.

Then back to the office. Sara came in with the x-rays and slapped them up on the light box for us to look at. All those bone cuts have healed well. There remains a little gap where the top cut above the acetabulum was made but it will close up. The trochanter cut for the SDH seems to have healed perfectly. Nine screws of varying lengths and seven suture anchors are visible on the x-ray. (I'd put up pictures but for some inexplicable reason the IT department didn't allow an orthopedic surgeon's office to run DICOM software which would allow them to view the x-rays!)

Dr. Mayo also patiently answered a bunch of questions about the repairs he made. If I understand correctly, the labrum was torn pretty much all along the front of the acetabulum, which is why seven suture anchors were required to sew it back. He's confident that it has/will reattach itself to the acetabulum. I'm guessing this was caused by the thickened neck of the femur impinging on the retroverted acetabulum. He also trimmed down the neck of the femur to minimize impingement (see the illustration at the beginning of this post).

There was also an apparent lesion near the top of the femoral head. One doctor diagnosed it as osteochondritis dissecans. It looked like it might be a little divot. But what Dr. Mayo found was a small bump on the femoral head that also scored the surface of the acetabulum. He performed an OATS procedure, removing a 10 mm plug of bone and cartilage where the bump was, and transplanting a plug of bone and cartilage from the edge of the femoral head, where the cartilage is less crucial. The plug is press-fitted and the bone should fuse with the surrounding bone. That should stop the damage to the cartilage in the acetabulum.

Dr. Mayo expects my hip should last at least 10 years, maybe more, but he thinks I'll probably need a hip replacement someday. I would be very grateful for 10 more years; it would definitely be worth it.

But the x-ray showed some bad news too: ectopic bone has formed in front of my hip socket, where I was opened up, enough to severely limit my range of motion--Dr. Mayo estimates I have a range of motion of about 20˚ before the ectopic bone starts impeding movement. As I understand it the bone is not what we normally think of--like a solid chunk--but is rather bone cells interwoven with the muscles. Evidently when these cells are traumatized by something like surgery they can differentiate either into scar tissue or fibroblasts, or they can differentiate into bone.

The treatment is another two or three hour surgery. The approach would be the same as for the PAO, and would require detaching a couple of muscles again. Dr. Mayo would hack out (he prefers the term "morselize," borrowed from spinal docs) the ectopic bone from the surrounding tissues. Recovery would be much easier, since I would still be able to bear full weight, but I would again be restricted from lifting my leg straight up while those muscles re-anchor. While he's in there, Dr. Mayo would remove most of the screws. By my count four would stay: two to reattach one of the muscles he detaches by chiseling off a chunk of bone (because bone-to-bone heals better than muscle-to-bone); and the two in the trochanter, since those would not be accessible through the PAO incision.

Shortly before surgery I'd get a single dose of targeted radiation to the area, to preemptively inhibit the cells that would want to turn to bone after this surgery. Evidently I'd need another CT scan before then to help the radiology/oncology guys do their targeting.

Surgery would happen sometime after the four month mark. The bone needs that much time to mature in order to be able to differentiate it from the surrounding tissues. In the meantime, I'll stay busy with PT, limited by my range of motion. Dr. Mayo said there's no point in trying to force it; I'd just make it "angry."

Before these surgeries Dr. Mayo told me that the likelihood of this happening was increased because we were doing two surgeries close together, so it wasn't a total surprise. Had we known how everything was going to turn out we might have done the two surgeries six months apart, but then I would have had two long recoveries rather than one.

But all this ectopic bone is just a speed bump (no pun intended). The important part is that the repair appears to have been successful.

So now I'm trying out my new hip. I'm limping around the house with one crutch reasonably well, better the more weight I put on the crutch. Without the crutch all I can do is lurch around, almost hopping on my good leg. I have PT orders so I'll need to find a physical therapist and get busy.

I'm very grateful to God for how he's working in all this. And I couldn't be happier with the care Dr. Mayo and Sara give.

Week 5 (SDH+5 weeks, PAO+~4 weeks): status

Progress continues, though usually not dramatic.

Last week I finally figured out what a 60˚ hip angle translates to on the knee CPM machine, and I hit that target, so I'm done with the CPM machine as well. Which is good, since it costs $25/day.


Two nights ago I slept in our own bed for the first time since surgery, and slept as well as in the hospital bed (which is to say about five hours), so today we returned the hospital bed. It's so nice not to have to sleep on the opposite side of the room from Krista! I'm now also able to turn onto my non-operated side, which is a very nice after a month in one position on my back. It's also better for my heels, since it takes all the pressure off them.

Today I worked a full day (telecommuting), the first since surgery. But that was sitting in the hospital bed; I'm not sure I'll make it all day yet on any of our chairs or couches.

I'm learning how to do more myself, such as getting into the shower, into bed, into the van. The main thing I need help with is changing my heel dressing.

Speaking of my heels, the left heel is fine now, but the right is slower to heal. We took off the dead skin part of the blister/sore and though it's ugly it seems to be healing better now. Krista cleans it at least daily and tapes gauze over it.

The crutches are taking their toll, making my hands a bit numb. Maybe I'm not using the proper technique.

I'm eagerly looking forward to my first follow-up appointment in three weeks. I'm guessing Dr Mayo will want me to wait longer before starting to walk on it.

All in all, it's going very well. We are very grateful to God for taking such good care of us!

Day 28 (SDH+27, PAO+22): Done with Fragmin shots

Today Krista gave me my last Fragmin (anti-coagulant) shot!

Day 27 (SDH+26, PAO+21): heel sores

While in the hospital my heels started getting very tender. Because I could only lie on my back, there was constant pressure on my heels. Plus the TED hose (compression socks) add a lot of pressure over the heels. Add to that a long hospital stay due to having two surgeries.

At home I sit up for large portions of the day, but I still have to lay on my back all night and during naps. And I'm supposed to wear the TED hose until my Fragmin (anti-coagulant) shots are done.

So my heels have gotten worse. My friend Scott who's a nurse considers my left heel to have a deep tissue injury. The dark spot is about the size of a nickel and is basically a deep bruise.

My right heel is worse. Scott calls it "an advanced stage two ulcer." It looks like a big blister and oozes a lot. For a few days my whole heel would throb when I would stand up.

Scott gave me a stern talking-to, telling me how fast these can get out of control, and told me to call my doctor for advice. He explained how pressure (the heel laying on the bed) and shear forces (the heel sliding back and forth on the CPM machine) and TED hose can restrict circulation, leading to this problem. He also helped me to adjust my CPM machine so it doesn't rub my right heel.

So I called Dr Mayo's office and emailed some pictures. It was a clinic day for him so his schedule was full, but in typical Dr Mayo fashion he still managed to shoe-horn me in the same day, calling me back around 9 pm. He told me to stop wearing the TED hose even though it's a bit early (yay!) and suggested getting off the CPM machine as soon as I reach my target (60˚, which I can probably hit but haven't gotten around to measuring yet, naughty me), and of course keeping pressure off my heels.

It's been nice not to have to wear the TED hose the last few days. My left heel isn't bothering me any more, with no swelling, though it still has that big round dark spot. My right heel no longer throbs when standing, so I think it's making a difference, though it is still red and swollen. Also, the last two or three nights I've not been sleeping in the CPM machine, which increases circulation because my right leg isn't elevated above my body all night. We're also going to try to experiment with lying on my side; having another sleeping position would help a lot. I'm trying to get up and around more, since movement and activity improve circulation.

Also, my sister sent me Herbal Ed's Salve which we apply every time I change my socks, which is a couple of times a day because of the ooze.

All this has made me realize how difficult it must be for people who are bed-ridden, and yet again how many blessings I take for granted.

Day 22 (SDH+21, PAO+16): recovery at home

Today is the 21st day since my first surgery (SDH). We've been home a week now and are settling into a routine.

[Warning: lots of boring details follow that probably only other PAO patients-to-be would find interesting.]

I haven't had any pain medication since the morning of Oct 4th (PAO+6), two days before we left the hospital. The narcotics messed up my bowels so I'm trying to stay away from drugs. My hip feels tight and tender, and hurts if I move it certain ways, but the pain is now more at the level of significant discomfort rather than outright pain (as when, say, one is sent out of recovery without an epidural bag).

Speaking of bowels, mine are working fine now, for which I am very grateful. That ileus was no fun.

My incisions are healing well. The glue is starting to peel so it looks funny. My last drain hole has closed up so today we removed the gauze and Tegaderm for good. The skin on my thigh is red and bumpy, likely due to irritation from being shaved.

Because I had two surgeries close together, and probably because I had so much IV fluid pumped into me (somehow gained 20 lbs in the hospital, not by eating!) I had more edema than normal. Both thighs and my midsection were pretty swollen but that has subsided noticeably. My non-operated left leg is pretty well back to normal, and my operated right leg is getting closer to normal. What is amazing to me is how much my leg muscles have shrunk in just three weeks--they're puny.

Dr Mayo specified several restrictions for how I can move my leg:

• No straight-leg lifting. This is because he had to cut across some muscles, and until they heal only the stitches through the muscle sheath are holding the muscles together.
• No abduction (moving the leg from inside to outside, as when making snow angels). This is because for the SDH surgery he cut a slice of bone from the greater trochanter where a bunch of muscles attach (instead of detaching the muscles themselves), and then screwed the bone back into the femur. This chunk of bone needs time to re-fuse with the femur, and using the muscles that attach to it could hinder fusion by pulling on the bone fragment.
• Maximum 60˚ hip flexion on the knee CPM machine. This is for the same reason as the "no abduction" rule. Evidently the hip CPM machine puts an upward force on the trochanter, which can result in the trochanter fragment not re-fusing with the femur. Dr Mayo prescribed a knee CPM machine instead and told me to limit it to 60˚ of flexion at the hip. I still need to figure out what 60˚ at the hip translates to at the knee, since the knee CPM machine is calibrated for knee angles; one way is to get a goniometer to measure the angle.

These limitations mean that I can't lift my leg into the car, into the tub, out of the CPM machine, etc. I need either someone to lift it for me, or to somehow lift it manually.

The most disruptive effect of this is that when I need to go to the bathroom at night, Krista has to get up in order to get my leg out of the CPM machine (see picture at left). Because of all the IV fluid I'm still shedding, I sometimes have to get up three times during the night; it's like having a newborn again.

I'm training the boys to help move my leg in situations like this in order to free up Krista. They're doing a good job, super eager to help however they can.

Once my leg is out of the CPM machine, I'm able to crutch around the (single story) house by myself, and I can seat myself at the couch, kitchen table, or commode. I can sit for an hour or two with some discomfort. I'm able to get in and out of our minivan with someone lifting my operated leg. I sit in the middle row because there's more leg room.

I still have to wear the TED hose (compression socks) which, along with the anti-coagulant Fragmin shots, are intended to minimize the chance of blood clots. After two weeks of daily Fragmin injections are done I'll be able to stop wearing the TED hose. Krista gives me the shot every morning after breakfast.

My herbalist sister has been loving on me with vitamins and supplements to aid healing (E7 protein powder, oatstraw tea, plus a bunch of other things--so many that it's hard to keep up!). I need to work through her list and get a routine going.

I've managed to find a comfortable enough position to work a few hours. I'm definitely not ready to be back at the keyboard full-time, but it's good to know I can work some to stave off poverty.

We've made a few small trips, to an apple farm with the kids, and to Walmart. I crutched around at the apple farm and then found a seat while everyone else walked around. At Walmart I used an electric cart; it worked fine but was somewhat uncomfortable, especially going over bumps. But it's good to be out!

We got a commode that perches over the toilet. It's very helpful for me because it effectively raises the seat about a foot, saving me from having to bend my hip too much, and it has handles on the sides so I can raise and lower myself in a controlled fashion. We only have one bathroom, so we just leave it set up and everyone uses it. The kids think it's fun to be perched a little higher.

We're renting a shower chair, which is necessary for me to be able to shower. Our bathroom has a tub shower, so the chair we got is taller and wider than our tub, allowing me to sit on the chair with my legs outside the tub and then rotate into the tub. I'm very glad to take showers again; during the two weeks I was in the hospital I had only one shower.

We're also renting an electric hospital bed from Apria which can raise or lower the head and feet separately. It has a trapeze which helps me to get myself in and out of bed. The mattress sleeps hot and sweaty without a mattress pad, but is reasonably comfortable with one.

So that's life at week three.

Day 14 (SDH+13, PAO+8): going home

We had one more visitor Monday night around midnight. We already had the lights off and were just settling in to sleep when the privacy curtain by the door started to open. Krista sat up and said, "What?!" and lo and behold, there's Dr Mayo, just returned from a business trip out of town. I said, "What are you doing here? You should be checking on your wife, not me!" "She's asleep already," he replied.

So we talked about how I'm doing and when I could go home. He said that once I met the last couple of PT benchmarks (e.g. traverse stairs) I could go home, maybe the next day or Wednesday. We talked a bit more about limitations, and he decided I shouldn't exceed 60˚ (instead of 90˚) on the CPM to reduce the chance of non-union of one of the bone cuts he had to make for the SDH. Other than that I basically have no PT to do until I can start bearing weight in 8 or 12 weeks, except a couple of simple exercises intended to maintain some muscle tone in the operated leg (quad, glutes, hams).

Krista and I went to sleep excited for the next day. We got going the next morning determined not to miss PT and therefore delay our departure. (PT is good but seems understaffed; if you miss them when they come for you, chances are they won't have time to get back to you that day.) PT Pam worked with me again teaching me how to do stairs ("up with the good, down with the bad") and on proper crutching technique. Then we went over some paperwork with a nurse (care instructions, sign a few things), Krista went to the pharmacy to get my Fragmin shots (an anti-coagulant I'll take for two weeks to minimize the chance of blood clots), and we worked on getting a walker. (We ended up returning the walker yesterday unused, as crutches are working fine.) At one point while Krista was packing I choked up at the thought of going home, I think for joy of being reunited and for remembering all we'd been through.

Krista called Kari to ask her to bring the van and the kids around 1 pm. They gingerly loaded me into one of the middle seats in the van since those have more legroom than the front passenger seat. All together again, we drove happily away on a nice sunny day. On the way home we got some real food for lunch and Jamba Juice, picked up a part for the minibike, and finally arrived home. I was somewhat uncomfortable due to all the driving movement and the long sit, but it was bearable. Maybe I should have taken some pain meds before the trip, but I didn't want to risk bowel trouble again.

So here we are, two weeks later, home and very happy to be together again! Thank you God!

2 weeks (SDH+13, PAO+8)

Lots happened today.....we're home!
More later.    :)

Day 13 (SDH+12, PAO+7)

Matt's doing awesome with physical therapy.  He's learned how to walk with a walker and crutches, how to pivot into a bathtub to take a shower, how to put on socks and pants, etc.

He had his catheter removed for good today, and was able to pee normally.  He also doesn't have to be hooked up to an IV anymore.  He's able to drink liquids and eat solid food again.  And the last time he took any pain medication was yesterday morning. 

He still needs more gas to be emptied from his bowels.  The nurses want to see several regular bowel movements before he's safe to go home.   We were hoping to leave tomorrow, but I think more realistically it will be Wednesday at the earliest. 

Since Matt's been completely off of pain medications today, his skin is rapidly clearing up from the rashes.  He also hasn't had as many muscle spasms.  His speech is clearer and he's not sleeping as much during the day.  His face isn't pale and has some color in it again.  It seems all the problems have been due to his body not liking the pain medications.  At home he rarely takes anything for pain so his body just isn't used to them.  Thankfully, things are gradually returning to normal for him now.

We had a visit from Howard and Doris Spear today.  And my sister, Kari, is coming to see us tonight.  It's nice to see friends and family and be reminded that this isn't our life here.  We'll sure be glad to return home.

Day 12 (SDH+11, PAO+6): feels like 3 weeks

We're making some progress!

Matt's been motivated and has been doing a great job walking.  He's been given more Miralax and suppositories and little by little he's been making small deposits into the commode.  He feels a little better and has been getting more sleep.  He still has occasional muscle spasms that are irritating, but not painful.  

Dr Mayo's assistant came to visit us this morning.  She said he's doing an awesome job with physical therapy and is amazed at how little pain medication he's needed the last couple days.

Matt's rashes are slowly diminishing and his skin is gradually looking better.  His incisions look really good too.

Our friends, the Blackstads, came by today.  I told them it's strange being in the hospital for so long.  It's like I've started another life here.  I have a certain routine such as going for a walk two times a day to get fresh air and exercise.  I've figured out the best food to get from the cafeteria, food that balances tastiness with nutrition and often get the same thing to eat every day.  Getting Matt in and out of bed to sit on the commode or go for a walk has its own routine that takes quite a lot of time.  He's not allowed to use the muscles in his right leg, so he can't lift it or move it himself.  When he's in bed he keeps his leg in the CPM machine which helps to keep the hip from tightening up.  Also, he still wears the compression socks, all of which I put back on him and turn on. 

More Matt quotes:

• Matt was getting ready to go for a walk.  I usually follow him with the wheel chair in case he needs to sit down.  This time he asked, "Will you bring the wheel barrow?"

• Matt requested some clean socks for walking down the hall.  He asked, "Can I get some more non-stick socks, I mean, non-slip stocks?"  

We heard the word "discharge" for the first time today.  Because Matt's doing well with physical therapy and his wounds are healing well, it looks like we just need to finish emptying his abdomen of gas and then we can begin thinking about returning home.

My mom and dad brought the kids by to visit again today.  Micah really wants us to come home.  Of course we are anxious to be a whole family again.

Day 11 (SDH+10, PAO+5)

Just a quick update...

We're still waiting for Matt's bowels to wake up and get moving.  The x-rays showed that his abdomen is mostly full of air, not much stool.  We've tried different laxatives, suppositories, stool softeners, enemas, walking, etc.  The doctors and nurses keep emphasizing that movement is the best solution right now.  We continue to pray and wait.

Today my Aunt Kay brought the kids to visit us for the first time.  Riding the elevators seemed to be the highlight.  Matt was pretty groggy so wasn't able to participate in much conversation.  I'm so thankful that the kids are doing well.  My sister, Kari, has been able to spend a lot of time with them and carry on with home education and "parenting".  The rest of my family as well as some friends, the Deffinbaughs, have helped to carry the load too.  It's a huge blessing to know that our children are in good hands, that I've been able to stay with Matt at the hospital and that we can focus our attention here. 

The symptoms of Matt's pain medications haven't been all bad.  My sister, Kari, came to stay with us last night and the two of has had some fun laughing at Matt.  You know how carefully Matt thinks and how modest he is:

• He was reading on his iPhone and said that the groups of words were turning into trucks and driving away off the screen.  (Just so you know, he recognizes the fact that his mind is playing tricks on him.)

• He was asking the nurse about some seepage from his wound site.  He asked, "Should my website be dry?"

• Randomly Matt asked me, "Where did you put our keys this time?"  I clarified, "Our car keys?"  "Yeah."   I answered, "The valet attendant has them."  "Oh", he said.  Curious, I asked, "Why did you ask me that?"  "I don't know," he said. 
  

• Referring to his catheter, "It's kind of fun to pee in bed!"

Obviously, it's not all funny here, but I was glad for my sister to be here and for us to have some laughs together.  Thankfully, Matt's pain is under control and he's been able to get out of bed and walk some.  We've also been able to get more sleep, which goes a long way.

By the way, I guess I didn't ever write that Matt's PAO surgery went well.  Dr Mayo was pleased with his work.  He was able to correct the hip angle to almost normal.  He doesn't expect there to be any problems with it.

The status summary is that there have been two good surgeries.  But recovery has been very difficult and not normal.

Day 10 (SDH+9, PAO+4): post PAO surgery

We didn't get any sleep last night.  Most of the time I was just standing by Matt's bed watching him moan in pain, or I was praying or crying.   I know that my lack of sleep is making me more emotional.  I've been here with him at the hospital for ten days now.   I've never seen Matt in this much pain.  On occasion he would cry out, "Help me Jesus!"   The pressure in his abdomen was so intense he couldn't imagine how it could get any worse.  We were very concerned for his health and feeling frustrated with a lack of information from the nurses.  We couldn't go forward with any plan until we heard the results of the x-rays.  But the nurse who would fill us in wouldn't be coming to see us until the morning.  We felt helpless.

At 5am the nurse finally came and said that Matt has an ileus, basically his guts are asleep from the shock of surgery and all the pain medications.  He's mostly full of extra air, not necessarily constipated.  The game plan now is to get him moving as much as possible to get things moving around in his abdomen.  That gave us a little hope and I think it was motivating to Matt because I awoke to him doing pull-ups on the trapeze bar in his bed.

The nurse also prescribed some valium which helps relieve spasms and causes drowsiness so the pain isn't as difficult to manage.  After that I think he got a little sleep.  I slept from 6-8am this morning and awoke to the nurses saying it was time for Matt to get some more x-rays of his chest and abdomen.  This time Matt used a walker to get into a stretcher bed that they used to roll him down the hall.  He did a great job with his hip and wasn't in too much pain.  I'm just glad he's able to move around a little now.

The nurses have changed his oral medications to an IV med called dilaudid.  They don't want him putting anything else into his stomach until the pressure has been relieved and he's been emptied.  So no food or drink for him today.  He's still on an IV with fluids, however.

Thank you all for your prayers and words of encouragement.  It's a huge blessing when we hear from you via email or blog comments.  I do read them all to Matt too.  It's wonderful to know that we're not going through this alone.  And most of all we are made keenly aware of our dependence upon God's mercy.  Yesterday when Matt was moaning in pain he said, "God is so merciful to us all the time."  That is true.  He is our sustainer in every way.