Vanishing comfort

After removing the mesh on the donor site on my thigh yesterday, I felt victorious.  Sadly that feeling changed as pain set in.  By mid-afternoon I was so miserable I called the ortho clinic and Cristie could only comfort me by saying my experience isn't unusual and I should up my pain meds.  By evening I was a mess.  I was in so much pain I was unable to eat and could just about get myself in bed.  I finally was able to sleep when Ira got me to take the full range of pain medication available to me.  I have continued to do the same today.  I wish I could say that all of this medication eliminates my pain.  At best it makes it tolerable most of the time.

The visiting nurse came and suggested we might want to try putting  antibiotic ointment on adaptic and putting that on the site.  It would need to be wrapped for when I walk to the bathroom or kitchen - the only 2 places I go now.  I'm just living on top of my bed and amusing myself with my iPad, computer and books.  Ira put a call into the ortho clinic and I'm not surprised to report that so far no one has called me back.

As I researched skin grafts on the internet I came to the conclusion that my physician is using an out of date approach to the donor site and thus has caused me unnecessary pain.  Ira was skeptical and rightly so as I have no medical background.  He did his own research and now agrees with me.  We should have used a plastic surgeon to do the grafts.  We made a bad mistake just going along with the doctor on this.

The day after

Somehow I never published this post and 2 others that I wrote when I was in the hospital.  I found all 3 under drafts.  One had nothing written but a title that was incomprehensible.  The other did have a short note but that was also incomprehensible.  This post was in bad shape but at least I could understand enough to edit it and perhaps make sense out of it.

While I was hospitalized I had 3 operations called "I and D"s.   I believe that stands for Incision and Debridment.  According to the title, this post was written a day after one of these  operations.

I was taken to the pre op unit at 4pm for my scheduled operation. No food all day and my share of pain made it less than comfy to wait around.  It was after 6 when I went to the OR. They removed the necrotic tissue in my muscle and told Ira my muscle is looking good.  How could that be????
I arrived back in my room in excruciating pain.  My nurse Nicole was right on top of it.  She brought my 2oz of morphine and whatever else I was permitted.  Back to sleep for a short period of time.  My pain meds are working so I need 2 rest.

Home Stretch? - skin grafts and more

It's hard to believe it's two weeks since I wrote anything.
When the doctor said I was ready for a skin graft we were excited and I was a little nervous.  Finally I was well enough to be nervous about surgery. The doctor instructed me to be serious about hydrating to get the best results from the graft.  So from 9/8 to 9/14 I drank water all the time, eliminated the water and in between these two activities I rested, ate, talked on the phone, did some reading and had some visitors.  I also continued to play with my iPad.   I should also mention that Ira became an expert in making protein shakes so I began to gain back some of the weight I lost in the hospital.  I must still need to replenish protein as drinking the shakes makes me feel better.  Eating helps as well!
Recovering from the skin graft is more difficult and painful than I anticipated.  As expected, the pain and difficult part has to do with the donor site.  If anyone is interested, I can tell you more about that but I think most people would find the information gross and gratuitous.  The positive aspects of recovering are many.  First of all, no more acti-vac.  Not being attached to a noisy, awkward and uncomfortable machine is a delight.  That alone is reason for celebration.  The second major relief is that I have very little pain at the wound sites. Finally I have cut down on my pain medication and am looking forward to cutting down even more as the donor site heals.
The best news is that at my doctor's appointment on Monday he said the graft has taken 99% already.  We were so happy we didn't realize we still had more to face.   Until we see the physician assistant on 9/29 Ira has to change my dressings twice a day.  It doesn't hurt me and I don't think it's difficult for Ira,  It is one more thing for him to do.  The other job I had to do was worse.  I had to remove the mesh covering my donor site by Wednesday.  Since I'm choosing to be an overachiever, I finished the job this morning.  I'll only say that it wasn't fun and I cried with relief when it was finished.  Ira cheered me on which helped me get the job done.
Now I'm hoping the donor site will begin to heal and the pain will subside.  The most painful time for me is when I get up after sitting or lying down for a while.  When that improves it'll be another step towards a more normal life.
I can't omit mentioning the fun I have trying to find something to wear.  3 days after the skin graft the donor site was uncovered and had to be open to the air.  My thigh is the location of my donor site and if I were 30 instead of 70 I would probably own shorts that would end before the donor site begins.  With some input from my husband I decided to identify golf shorts I no longer wear and cut off the left leg so it would end above the donor site. 3 pairs of shorts were attacked by scissors and thus the beginnings of a wardrobe for skin graft healing.  Sadly I'm usually chilly no matter the temperature inside or out.  In my effort for warmth I've paired long sleeved tops and various sweaters with my stylish new shorts.  What my appearance lacks in beauty it makes up for in originality.

Dressing changes

No one tells you what to expect with dressing changes - so here goes.  First, as I learned the hard way, you need someone who really knows how to do acti-vac dressings.  I have little medical knowledge, still I can see they are more complicated than many other types of dressings. So if you need to use the acti-vac take good care of yourself and ask for someone who already knows how to do these dressings well.  You do not want to have one replaced because it wasn't done correctly the 1st time.  The pain involved is enough without at least doubling it.
So let's talk about the pain involved in changing dressings. In the beginning I found the dressing changes unbearable and couldn't stop myself from screaming and crying when the old dressings were removed.   As  some healing appears to be occurring I am more able to bear the changes.  It helps me to have my biting pillow and to take deep breaths.  Perhaps the worst part is the increase in pain experienced for some period of time after the dressing is changed.  Initially the pain is so terrible I am unable to control it with pain medication - which means basically the pain isn't controlled for some period of time.  I believe the period of unbearable pain has shortened recently.  Nevertheless, I look forward to each dressing change with dread and with worry.  The worry is about whether or not the nurse will be well trained with this type of dressing.  Having to have the dressing redone once has sadly frightened me to probably unreasonable levels.
Some day this will be over.

My Family Goes Home

I'm starting with unfinished business from my previous blog.   The good news is the doctor put me on antibiotics  which seems to have dealt with my infection - assuming that was what was causing my fever.  To prevent further issues I contacted my case manager and the Visiting Nurses Assoc. and discussed my situation with her. Among other things I requested that only nurses with experience changing the kind of dressing I'm using be sent to me.  So far my request has been responded to but I am certain I'll need to continue to call Sandy to discuss the kind of help I need.
I am walking better with the walker but am continuing to experience quite a bit of pain.  Why the doctors order the pain pills to be taken every 6 hours remains a mystery to me.  I have made it past 4 only once when I was awake and a few times at night when I slept 5-6 hours.  Pain, pain and more pain feels like the story of my life right now.  From everything I've heard and read it's important not to let the pain get too bad.  On the other hand the residents who write my prescriptions seem to have been taught that enduring pain for as long as possible is a good thing.  Who is teaching them this?  Are we determined to ignore all research?  Patients in pain heal more slowly or is that just a story someone made up?
My brother and sister in law came from Connecticut and stayed with us Friday and Sat. nights.  My daughter and granddaughter came from Williamsville and stayed with my son in Ann Arbor Friday - Monday.  Enjoyed the opportunity  to be with my brother and sister in law.  Unfortunately I didn't get too much time with Wendy(my daughter) and  Haley, (my granddaughter).  But it was better than not seeing them and at least we got in some talking time.
It appears that Greg and Pam managed to plan time for all of them that encouraged them to engage in games and stay away from the computer.  I was happy that my bother had time with my family.
Another dressing change yesterday left me in lots of pain which finally let up sometime during the night. Spent the day in invalid mode hoping the redness around my wounds would subside.  I'm fearful that my skin graft will need to be postponed and am not sure I'll handle this well.

Confusion - again

Monday I saw my doctor who was delighted with my progress.  How amazing - every other time I went to see him I was hospitalized.  The day started with this great news and hopes that I would be able to have a skin graft on 9/10.
Despite plans for the visiting nurse to put on my acti-vac dressing in the evening, unexpectedly a nurse appeared in the afternoon.  As soon as she let me know she had "some" experience with this type of dressing I should have sent  her away.  More proof that my brain is not firing on all cylinders.  She dressed my 3 wounds incorrectly. After an hour or so the acti-vac wouldn't work because of a leak in the dressing.  Why would the agency send a nurse not properly trained to do this dressing?  Is common sense totally removed from healthcare in the US?  The night nurse, Linda, who has lots of experience with these dressings had to redo the whole thing. While I'd love to let you know how awful this was because deep wounds are not happy with being messed with 3 times in one day, I'll skip the details.
The pain has been grim and last night I had a temp of 100 degrees - down to 98.8 this morning. We have a call in to the doc and are impatiently waiting to hear what he has to say.  Ira and I suspect an infection and we hope his first line of defense will be an antibiotic. I don't want anyone to remove this dressing until it's required.  Too much messing around with it leaves me in additional pain and I'm fearful it exposes me to more infections.  So we'll see what happens.
Otherwise I continue to receive lots of support, cards and food from friends and acquaintances.  The caring shown by people who barely know me and those who know me well  is changing me.  Even at the ripe age of 70 I grasp the reality that I can grow emotionally as well as intellectually.

Home from the Hospital

Another wrong turn and I ended up in the hospital for 11 days - 11 days longer than I was counting on! Came home on Tuesday and am delighted to be here.
In the hospital I had 3 more procedures for a grand total of 6 times under anesthesia.  Among other things, an infection needed to be cured, anemia taken care of and low protein levels identified. The docs encouraged me to gain weight and then would remind me I couldn't eat after midnight since I was having a procedure the next day.  Needless to say I'm eating much better at home and even managing a daily protein drink.
Today was the day of terror - changing my dressing.  It turned out that removing the old dressing was tolerable but putting on the new one and then turning on the acti-vac pretty much destroyed the rest of the day for me since I've been unable to control my pain with the range of permitted medications.  Tomorrow I'll call the pain clinic for help.  Right now I'll do a little research on the internet.
Good news!  yes - I do seem to be going in the right direction now,  It will take a long time but the day will come when I'll be able to be an active person again.

Not going in the right direction

Due to the amount of pain I'm experiencing I need to return to the hospital for testing.  Sad to say, I'll be staying overnight - not good news for the weekend.  So I'll check in again in a few days when I'm home.

Advice and Suggestions

THE ACTI-VAC - YOUR NEW BEST FRIEND

Perhaps you will be better informed than I was when I left the hospital the 1st, 2nd and 3rd time.  Follow-up instructions were minimal.  I knew I'd wear an acti-VAC from KCI.  The person delivering this device to the hospital showed me how to turn it on and off, showed me the instruction books and assured me that there was  nothing much I had to do - it would work beautifully.  If not, there was a service number to call.  We did call several times and on occasion the person who answered the phone was helpful.  Here's what we (my husband and I) learned so far that might help others:

• Don't touch the machine itself unless you need to reset it.  
• Always keep it in the special pouch they give you (it's very attractive, black does go with everything).
• When you pick it up use the straps and be sure not to use the tubing to pick it up
• Wear the vac around your neck when walking or sitting - if possible.  If you want to take it off your neck, put it on the floor or another hard surface.  Don't put it on your bed, sofa or chair.  Usually I put it on the floor if I'm sitting anywhere for a long time.

Most of the above was learned only after using the vac for 2 weeks and experiencing numerous malfunctions.

DRESSING CHANGES

Soon I'll know more about this but for the time being I'll tell you what I'm sure of.  I learned all of this the hard way and hope I save at least one person some pain.

• Turn off your vac 2 hours prior to the appointment for the dressing change.  Your visiting nurse should let you know when she's arriving.
• Take a shower!!!!  You are allowed to get the dressing wet before it's changed and you can even wash your hair.  Make sure you sit in the shower as you are not as strong as you were.
• Get an order for lydocaine. The nurse injects the lydocaine into the old dressing and it helps numb your wound.  Also the nurse kept pouring saline solution on the wound as she was changing the dressing.  The saline solution felt very comforting. 
• I learned the hard way -  ask for a nurse who is experience in changing dressings for an acti-vac.  Twice I had to have my dressing changed a second time because the first nurse didn't get it right.  This is very painful so be insistent on experience.

I will write more as I learn more.

My Life (?)
Personally, my bad news is that the hematoma that was removed on Tuesday increased my pain as my dressings were changed today.  In addition to screaming I managed to use some unladylike language.  My day has been ugly since then.  I've barely eaten, can't do much and am feeling down in the dumps.  Especially since the nurse told me she that if I were her Mom she would have me see a vascular specialist.  Yes, my reaction is to feel terrified.

Time to take some pictures, pills and then watch tv until I'm off to sleep - my most favorite location.

Not my favorite surprise

We made to the doctor at 8:15 yesterday.  I followed my husband's advice and didn't wear any jewelry.  We both knew I would be admitted..  Everyone examining me was sure that the swelling and pain in the back of my calf was the result of muscle damage and needed immediate surgery.  We all define immediate differently.  In any case by about 2pm  I was finally taken to the OR.  A  very nice anesthesiologist made sure  I was gone quickly.  In fact today I've spent most of the day sleeping it off.
The unexpected finding was that I had a hematoma and not muscle damage.  Apparently it had been growing steadily since my accident and hence my surprising and unexpected increasing pain.
I woke up in agony.  I'm reluctant to say pain has reached a 10 on that weird 1-10 scale they use in health care. I wouldn't hesitate to call this a 10+.  The anesthesiologist offered me a pain block which took effect quickly and allowed me to remember that I had a lot to live for.
I was moved to a room on the orthopedic floor.  My husband had a few things to take care of so he left for a while since I seemed stable.

Now I'll list my reasons for loss of faith in hospital care read it or skip it at you own risk:

• I had to use the bathroom.  The call bell brought no results so I pulled my iv with me to the toilet.  No one noticed either that I went to the bathroom or that my iv was unplugged.
• At some point an aide arrived to ask if I needed help.  I thought plugging in my iv should be the 1st order of business and a bedside commode the 2nd.  I believe the IV did get plugged in quickly.  The commode took a few hours and quite a bit of nagging.
• I needed pain medication.  I was told my  2 hours weren't up (doc's orders) and my nurse was at lunch, dinner or break.  I can't remember. I lost it!  I said this is 2010 and I thought we knew how to control pain.  Apparently calling the doctor for new orders wasn't part of their plan.  Luckily my husband returned to distract me.   They came in to remove my iv.  I got my pain pills by not permitting any one to do anything until I was given percoset.  By this time no one like me too much except my husband.

Ira was concerned about my coming home that night since I was in pain and also my leg was numb from the pain block.  I was concerned about staying in the hospital since the care was worse than anything I could do for myself at home and I do have my devoted and competent husband to help.  We left the hospital at about 7 and it would be difficult to ever get me there again.   Since at some point I might need a skin graft - well let's not go there yet.

Despite some difficulty getting me up the steps I got in the house, ate some ice cream for consolation and  got into bed after talking to my son and my brother whose love and concern meant a lot to me.

At 11 I couldn't wiggle my toes because of the pain block.  We were both concerned.  I woke up at 6:20 and could wiggle my toes so we had a minor celebration.

Today I ate and slept, ate and slept, ate and decided to try to write this.  I can't imagine it makes sense. 

Our main learning is that my husband and I don't like to bother anyone if we can help it.  Hence we waited too long to call the doctor which led to unnecessary suffering.  I hope we can remember this in the future and act on it.

Once again, I am feeling sleepy.  Hope to write more tomorrow and will some day get my pictures in order.

night night 

Hurting again

Tomorrow I have an 8:15 appointment with the surgeon.  We're worried.  My pain, swelling and redness has increased.  This isn't the direction we expected to be going.  Hopefully I'll sleep tonight and will feel well enough to report in tomorrow.  Ira is concerned about some additional muscle damage.  Not a cheerful thought.

3 times a week new foam on my wounds - Are you jealous?

Of course you're not jealous.  Here's some better news.  I no longer scream and cry when my dressing is changed.  I do bite my pillow.  Happily, my pillow doesn't mind at all.  Here's how the nurse helped make it bearable.
1. I know when she's arriving so I take 2 pain pills and one valium
2. She pours lydicain on my dressing so it soaks into my wound and helps numb the pain
3. I bite my pillow when necessary.  I never draw blood!
It's not fun when she finally turns the acti VAC back on but I remind myself that it helps me so I try to work with that happy thought.
So little has been explained to me.  Today I asked the nurse about how much walking I should be doing.  She said right now the important thing is to get the swelling down on my leg so I should limit my walking.  I didn't know that but now will walk less frequently since it's not doing the good things I thought walking would be doing.

Sleeping is only a challenge on occasion.  Last night I slept well and only napped briefly today.  Everyone has decided to feed us so we now have a kitchen with more food than 2 people could consume in a week.  I choose to believe that food is an expression of caring and I appreciate everyone who is stopping by, making or bringing food, calling and sending cards.  It makes me feel better in my heart and soul so my blessings to all of you.

What now?

It seems that every evening my pain increases quite a bit and my calf swells more than during the day.  Usually the worst is when I get into bed and can't find a comfortable position.  Have adjusted my meds so that I'm taking Vicodin during the day and Percoset at night.  Of course I'm taking the generics to keep the cost down.
My new best friend is the acti Vac which I wrote about before.  It goes everywhere with me.  Yesterday I was surprised to learn that even when fluid isn't being evacuated the suction helps healing.  That was comforting.
Time to get ready for bed and to take pills.
Soon I'll post some really ugly pictures of my leg.

Learning More

Slowly my husband and I are learning more about recovering from a fasciotomy.   Not the easiest journey one can take but of course this is not a choice.  My acute compartment syndrome is the result of an accident that occurred on July 28th.  After 9 holes of golf, I was pinned between 2 golf carts while I was putting my glove and balls in my golf bag.  The person behind me was busy adding our scores and didn't watch where she was going.  Hence she smashed into me and severely damaged my left calf.   Initially we were all unaware of the seriousness of my injury even though the pain was excruciating.  My husband, a retired physician, knew exactly what the problem was and immediately took me to the ER.   I was diagnosed with Acute Compartment Syndrome and had a fasciotomy.
Few of us love  being in hospitals but I didn't fight that first night as I was in need of constant pain medication.  The next evening I was discharged with my new best friend - an acti-vac.
Will write more soon.  Over a week since my accident and I'm still unable to spend more than about 15' sitting still at the computer and concentrating. Drugs dull my pain somewhat but they also dull my brain.

Diagnosed with Compartment Syndrome - Twas the night before torture

Tomorrow the dressing on my fasciotomy gets changed.  This is the 3rd time for this wonderful experience since I injured my calf on Wed. July 28.  Saturday when the nurse changed the dressing for the first time, I screamed, yelled, cried, cursed and generally was really well behaved.  Tuesday the doctor. put me under to see what was happening with my wounds and I've been in horrible pain ever since.  Can you see why I'm looking forward to tomorrow  Soon I'll tell you more about this injury and hope someone with experience can clue me in as to what I can expect in the future.  Time for meds!