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.

SDH video

I found an SDH video, narrated by Dr Ganz who pioneered this particular technique. Dr Mayo did something very similar in my first surgery, except once the joint was opened the repair was much different (labral repair, 10 mm OATS, shave neck offset). The surgery itself begins about 8:20.

I purposely waited until after my surgeries to watch this.

Thanks

Krista and I both feel overwhelmingly thankful.

Thankful to God for sustaining us and blessing us through so many different people.

We are thankful for Dr Mayo, for his amazing skill as a surgeon and his top-notch care. Also for his cheerful PA Sarah, who checked on us frequently, and who had to field a 2 am call during the ileus adventure.

We are thankful to the nursing staff for their gentle care: Kim, Larissa, Stephanie, Martha, Nick, Karie, Ron, Chris, Rowenna, Shienna, Joy, Charlene, Margie, Pat, Ivonna, Sherry, Phyllis, Katie, Jesse, Joey, Christina, Jaeyoung, Louella.  I'm sure I've left some out. Their care was excellent, and often personal.

We are thankful to the physical therapists, David and Pam, for their encouraging, patient, and needful semi-torture.

We are thankful for drugs, technology, and anesthesiologists (particularly Drs. Robinson and Elder). Epidurals are amazing!

We are thankful to all the family and friends who helped with the kids so Krista could stay with me: Krista's parents, aunt Kay, and sister Kari, and our friends the Deffinbaughs, and for others who offered to help. Also my good friend Scott Matheny stayed with me a night and continues to give a lot of good advice.

We are thankful for all of you who visited, called, commented, emailed, or sent cards. Thank you for sharing our joys and burdens!

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.

Rating Pain

Periodically the nurses would come in and ask me to rate my pain on a scale of 1 - 10. I found it difficult to rate it, as I could easily imagine more intense pain than I was feeling at the moment.

Courtesy of my brother Justin and my good friend Paul Martin, here are Brian Regan's thoughts on rating pain:

Updates

I updated some past posts, tweaking the titles to include the number of days since the particular surgery, added tags, corrected typos, added some links (e.g. Wikipedia links to "ileus"), etc.

Synopsis

We've given lots of details so now I think a synopsis is in order.

Wednesday the 23rd Dr Mayo performed the SDH to clean up my socket. It was messier than expected, requiring a major labrum repair using a record seven suture pins, and a 10 mm OATS plug. The labrum repair also involved shaving off some bone, temporarily increasing my degree of dysplasia.

Dr Mayo had hoped to do both surgeries at once, but the amount of work the SDH required made that not possible. Plan B was to do the PAO on Friday but my platelet count was low so surgery was postponed to Monday. The PAO went well and Dr Mayo was able to almost completely correct the dysplasia. He expects no problems with it.

So the surgeries went very well. There was one major problem, an ileus in which the narcotics I began taking when they transitioned me off the epidural put my bowels to sleep. Perhaps the chances of getting an ileus could have been reduced had it been possible to do the second surgery sooner, so that I would have needed the epidural and narcotics for a shorter period of time. But I think it's worth it even the way it's happened because I'll only need one recovery.

I hope to ask a bunch more questions (when I'm not on drugs) at the next follow-up appointment about the nature of the damage, the repairs, and his prognosis for my hip. Also Sarah his PA said I'll be able to get pictures of everything. I'm eager to see what the damage inside the joint actually looked like.

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.

Day 9 (SDH+8, PAO+3): post PAO surgery

Please pray for Matt.  I'm really concerned for him.  I think today was the most eventful day so far.  Matt has a lot of discomfort in his abdomen and lots of pain in his hip when he moves.  Today's events were primarily attempting to deal with these two problems.

He's continuing a routine schedule of taking two primary pain medications oxycodone (every 3 hours) and oxycontin (every 12 hours).  He's also given vistaril (every 4 hours) to help amplify the effects of the pain meds.   To keep on top of this schedule we're using our iPhone to set alarms so we or the nurses don't forget, especially when we're trying to get a precious few moments of sleep during the night.  Our iPhone has been a wonderful thing to have here on a long hospital stay.  I've used it to take pictures, check email, make phone calls, look up information, etc.  These medications make Matt very groggy and sleepy.


The nurse gave Matt an enema today.  We hoped it would loosen his bowels to bring some relief from his huge bloated belly.  He must have sat on the commode for an hour but there wasn't much to show from it.  All that sitting cut off the circulation a bit to his legs and as a result caused red blotches all over his legs.

Matt's diet today has been mainly clear liquids.  He's afraid to put anything else into his stomach and add to the discomfort.  He's also been a little nauseous and is afraid he'll chuck it all up.  

Dr Mayo is going out of town so he asked a general surgeon to come look at Matt's abdomen.  Dr Lynch ordered chest and abdomen x-rays.  Matt is in so much pain from his hip that we talked the technician into letting him come get his x-rays on his bed instead of having to get in and out of a wheel chair.  I helped a man wheel Matt down and around the hall in his bed.  Again we heard someone rave about Dr Mayo.  The technician who took the x-rays said that Dr Mayo is a phenomenal surgeon and does precision work.  We're waiting for the results of the x-rays.

Matt had his catheter removed this morning, but hadn't urinated all day.  I guess it's quite common to be unable to pee afterward.  The nurse decided to do a bladder scan to determine if Matt was full of urine.  He was indeed.  They inserted a straight catheter to empty his bladder.  They measured about 975 ml of urine.  That helped to relieve him a little.

Matt has developed a new rash on his stomach.  When Dr Mayo came to visit us this morning he said it looks like some sort of chemical reaction.  Thankfully neither the rash on his stomach nor the rash on his back is bothering him.

The nurse removed Matt's hemo vac (tubes inserted near his surgery incision to expel extra blood) today.  It's nice to have less tubes and contraptions to deal with now.

Today the physical therapist came to see Matt while I was down the hall for a little break from the hospital room.  They got him into a wheel chair and he came down the hall to surprise me.  The excitement didn't last long though because of intense pain in his hip.  Matt said it felt like his hip was made up of little sticks that were breaking.

The nurses often ask Matt to rate his pain on a scale of 1-10.  I think he's rating his pain too low.  He said a ten on his scale would be for someone to rip his femur out of its socket and beat him with it.  I think the lady next door has a different scale.  I overheard her say that her pain was at a five or six, as she explained to the nurse with a cheery and enthusiastic voice.

At 9pm we were notified that Matt was to be taken to get an ultrasound.  Evidently this is routine for Dr Mayo's patients.  He wants to make sure there are no blood clots in Matt's legs. 

When we arrived back from the ultrasound, the nurse gave Matt some Miralax, a laxative formula.  We're hoping it will get his bowels moving to bring him some relief.   It's already 11pm and nothing has happened yet.  I think it's going to be a really long night.