It is my intention to record here some of the tips and experiences that I think might help someone else in the critical three weeks. Yes, circumstances differ, but knowing other people’s experiences helped me to gauge my own.
This is one of the most important three week periods in our lives and we are drugged and in unfamiliar surroundings and – to some extent – at the whim and competency of people that we do not know. The better we have internalized what to expect, the more likely we are to maximize the options and solve the issues.
For me, I define the three weeks as beginning Friday before the Monday surgery – the day my “central line” went in.
Setting
My surgery was posterior fusion T4 to the sacrum, performed by Lawrence Lenki at Barnes Jewish Hospital in St. Louis. Because St. Louis is hours from home, we rented an apartment. Your results and experiences will differ, if you are near home.
Also, I had added to an active exercise program in the six months that I waited for surgery. We called the extensive efforts at the gym and in water aerobics “pre-hab.” It made a huge difference.
Family and Friends and Caregivers
Have someone wait with your spouse or primary caregiver during surgery. The more involved that primary person is with your condition, the less able he/she will be to cope during the surgery. Do not, however, have an army.
Have someone with you 24 X 7 in the hospital, if possible. We mostly achieved this with primary plus one. Most medical help responded very positively, as such coverage makes for faster improvement and an easier time for the staff. Things that the bedside sitter can do include:
• Find the morphine button if you lose it.
• Find the call button if you lose it. (You will, initially, be unable to focus well or turn without help and losing the call button may be a matter of having it a ½” from where you expect it to be.)
• Write down the names of nurses, techs, and others … and even what you think of them. It can get really overwhelming as to who is coming and going. Not everyone in your room is qualified to help you with everything.
• Write down all advice/instructions, as it can be hard to remember and some inconsistencies ought to be checked out.
• Find out what’s going on, if a call on the call button results in no action.
• Protect your sleep from unnecessary interruptions … rarely, but sometimes possible.
• Make lists of questions you want to ask at the next rounds or therapist visits.
• Keep track of any paperwork you are given.
• Cheer your progress.
• Share conversation when sleep eludes you. (With both our daughter and our “almost daughter,” I had late night conversations that I will cherish for their own sake.)
You will also have many people who want to be updated. I created a mailing list and added people as they requested updates. Beginning the night of the surgery, my husband sent mail to the list. I enjoyed getting the responses, people who really care were relieved, and the notes themselves are treasures to preserve. It was quite a burden, at times, for my husband; but he also benefited from the summarization and reflection.
Responsibility
Give yourself up to the competence of your surgeon on the day of surgery. Resume primary responsibility, the next day.
• Tell people what you need.
• Tell people anything that seems unusual.
• Let people hear your real gratitude, but do not hesitate to ask for help.
• Reject that which doesn’t make sense. Consult and determine why it doesn’t make sense and what the correct approach should be.
Interruptions
Your hospital stay will be busy. Interruptions and activities will vary with the hospital and your progress, of course. Here are some of mine:
• Nurse or tech at the beginning and ending of shift
• Someone to change bags on the IV for fluid, antibiotics, “food substitute”, etc. or check the oxygen supply
• Someone to respond to alarms on any of this (My oxygen supply alarm went off sometimes with nothing more than my raising the finger that had the monitor on it. I was on and off oxygen until about day 4 or 5. Hated it.)
• Someone to empty container for catheter (The catheter is generally left in until it is obvious that you can make it to the bathroom. I actually asked for it to be left in for one last night so as not to overburden the night with up and down and possible opps. I think that was night 3 (Wednesday) after the surgery.)
• Meds delivery (You will get both new meds and your usual meds from the nursing staff.)
• Vital signs checks
• Blood sugar checks (No pain at all while you are still on morphine, but you do tend to run out of fingers.)
• Insulin shots to counteract the sugar levels caused by the gunk in the “food substitute”
• Fellow(s) – if your surgeon has Fellows – doing rounds (very early morning)
• Surgeon and trailing personnel doing rounds (Hey, I actually managed to get smiles from Lawrence Lenkee during rounds.) (still early morning)
• Rounds by surgeon’s scheduling nurse or other person assigned such duty (generally afternoon)
• Rounds by hospital’s patient rep or similar post
• Cleaning people (in general, miraculously unobtrusive and still effective)
• PT – physical therapy, twice per day
• OT – occupational therapy, once per day, to learn how to take care of yourself (more later)
• Flower delivery, visitors, and such (I had no visitors beyond my primary support.)
• Someone to help you “log roll” – side to back, back to side, … (Position changes every two hours are recommended.)
Physical Therapy
Embrace the physical therapy visits, as this is your opportunity to learn what will help you move forward. Physical therapy goals will likely be
• ICU, day one no PT
• Day two log roll, get out of bed, sit in chair for an hour (After this, you may be cleared for catheter removal.)
• Day three walk into the hall (with walker)
• Walk further down the hall
• Walk further yet
• Ect.
• Before checking out, at least one time at walking to a place where you can practice stairs. BJH has a device with four 3” steps up and two 6” steps down. Up was easy for me, the steeper stairs seemed very steep the first time. Most stairs in homes are 7 – 8” rises.
Occupational Therpy
Occupational therapy is also important. For me, the OT person tended to show up after the PT and I tended to fall asleep on her.
• The most critical step in OT is using the toilet and the wiper assist.
• There is also a reaching device that can help you pick up things from the floor or pull on pants.
• None of the other devices seem to have continuing value for me, but you might find them useful.
Hygiene in General
Hygiene becomes additionally important, of course, to prevent infection. It can also be your best friend by making your skin feel better, refreshing you, and providing some babying.
Things that may or may not increase your interest in hygiene:
• I have always needed to wash my hair every day or so or I begin to hurt in the scalp and face.
• Since surgery, I have had a great deal of difficulty with temperature swings and sweats that soak me, particularly around the head. These are easing off as I approach three weeks post surgery, but I understand that I am not unusual in this.
• Bathing is a time to inspect the body. With the help of my caregivers, I found and addressed some surprises.
• The ritual of shampooing, bathing, and brushing teeth can be soothing. (It’s exhausting, too, but everything is.)
Modesty
Modesty is a pleasant social convention that can be ignored if doing so carries sufficient reward.
Skin
Until two weeks after surgery, getting the back wet is not approved. (Having the water soluble stitches dissolve early is obviously not a good idea.) OT assumption is that I would first soap and then rinse all but my legs and someone else would do the legs. I was spoiled and a caregiver did it all for me. Placing the potty chair in the shower made it safer than it would otherwise have been.
After two weeks, when it was okay to shower, my husband just showered with me. (Not the experience that we would have giggled over when we were younger, but a good sound answer and a deep pleasure of another sort.)
Hair
First step was a really short – and very good – haircut.
BJH (my hospital) supplied shampoo caps. Heat one in the microwave for 15 secs, put it over the hair and massage. The shampoo is included. There is no need to rinse. To our amazement, it worked magnificently. I couldn’t get both hands up to do the scrub, but I could talk my care givers into this marvelous treat. Some 24 hour periods, I managed to get two of these! We ordered more of these for after hospital release.
Once released from the hospital, we could put the potty chair thing in the shower and wrap me up to protect the back from getting wet and a care giver could wash my hair. The wrap consisted of a towel around my shoulders with a plastic trash bag (with a head hole) over that and another towel over it all. It worked.
This tremendous joy, but tiring experience, was replaced at two weeks with a real shower and shampoo.
Even after the shower was approved, twice in the late evening, I was itching from being sweaty and my husband provided another shampoo cap shampoo. YES! I have been spoiled.
<Ran into length limit ... to be continued>
This is one of the most important three week periods in our lives and we are drugged and in unfamiliar surroundings and – to some extent – at the whim and competency of people that we do not know. The better we have internalized what to expect, the more likely we are to maximize the options and solve the issues.
For me, I define the three weeks as beginning Friday before the Monday surgery – the day my “central line” went in.
Setting
My surgery was posterior fusion T4 to the sacrum, performed by Lawrence Lenki at Barnes Jewish Hospital in St. Louis. Because St. Louis is hours from home, we rented an apartment. Your results and experiences will differ, if you are near home.
Also, I had added to an active exercise program in the six months that I waited for surgery. We called the extensive efforts at the gym and in water aerobics “pre-hab.” It made a huge difference.
Family and Friends and Caregivers
Have someone wait with your spouse or primary caregiver during surgery. The more involved that primary person is with your condition, the less able he/she will be to cope during the surgery. Do not, however, have an army.
Have someone with you 24 X 7 in the hospital, if possible. We mostly achieved this with primary plus one. Most medical help responded very positively, as such coverage makes for faster improvement and an easier time for the staff. Things that the bedside sitter can do include:
• Find the morphine button if you lose it.
• Find the call button if you lose it. (You will, initially, be unable to focus well or turn without help and losing the call button may be a matter of having it a ½” from where you expect it to be.)
• Write down the names of nurses, techs, and others … and even what you think of them. It can get really overwhelming as to who is coming and going. Not everyone in your room is qualified to help you with everything.
• Write down all advice/instructions, as it can be hard to remember and some inconsistencies ought to be checked out.
• Find out what’s going on, if a call on the call button results in no action.
• Protect your sleep from unnecessary interruptions … rarely, but sometimes possible.
• Make lists of questions you want to ask at the next rounds or therapist visits.
• Keep track of any paperwork you are given.
• Cheer your progress.
• Share conversation when sleep eludes you. (With both our daughter and our “almost daughter,” I had late night conversations that I will cherish for their own sake.)
You will also have many people who want to be updated. I created a mailing list and added people as they requested updates. Beginning the night of the surgery, my husband sent mail to the list. I enjoyed getting the responses, people who really care were relieved, and the notes themselves are treasures to preserve. It was quite a burden, at times, for my husband; but he also benefited from the summarization and reflection.
Responsibility
Give yourself up to the competence of your surgeon on the day of surgery. Resume primary responsibility, the next day.
• Tell people what you need.
• Tell people anything that seems unusual.
• Let people hear your real gratitude, but do not hesitate to ask for help.
• Reject that which doesn’t make sense. Consult and determine why it doesn’t make sense and what the correct approach should be.
Interruptions
Your hospital stay will be busy. Interruptions and activities will vary with the hospital and your progress, of course. Here are some of mine:
• Nurse or tech at the beginning and ending of shift
• Someone to change bags on the IV for fluid, antibiotics, “food substitute”, etc. or check the oxygen supply
• Someone to respond to alarms on any of this (My oxygen supply alarm went off sometimes with nothing more than my raising the finger that had the monitor on it. I was on and off oxygen until about day 4 or 5. Hated it.)
• Someone to empty container for catheter (The catheter is generally left in until it is obvious that you can make it to the bathroom. I actually asked for it to be left in for one last night so as not to overburden the night with up and down and possible opps. I think that was night 3 (Wednesday) after the surgery.)
• Meds delivery (You will get both new meds and your usual meds from the nursing staff.)
• Vital signs checks
• Blood sugar checks (No pain at all while you are still on morphine, but you do tend to run out of fingers.)
• Insulin shots to counteract the sugar levels caused by the gunk in the “food substitute”
• Fellow(s) – if your surgeon has Fellows – doing rounds (very early morning)
• Surgeon and trailing personnel doing rounds (Hey, I actually managed to get smiles from Lawrence Lenkee during rounds.) (still early morning)
• Rounds by surgeon’s scheduling nurse or other person assigned such duty (generally afternoon)
• Rounds by hospital’s patient rep or similar post
• Cleaning people (in general, miraculously unobtrusive and still effective)
• PT – physical therapy, twice per day
• OT – occupational therapy, once per day, to learn how to take care of yourself (more later)
• Flower delivery, visitors, and such (I had no visitors beyond my primary support.)
• Someone to help you “log roll” – side to back, back to side, … (Position changes every two hours are recommended.)
Physical Therapy
Embrace the physical therapy visits, as this is your opportunity to learn what will help you move forward. Physical therapy goals will likely be
• ICU, day one no PT
• Day two log roll, get out of bed, sit in chair for an hour (After this, you may be cleared for catheter removal.)
• Day three walk into the hall (with walker)
• Walk further down the hall
• Walk further yet
• Ect.
• Before checking out, at least one time at walking to a place where you can practice stairs. BJH has a device with four 3” steps up and two 6” steps down. Up was easy for me, the steeper stairs seemed very steep the first time. Most stairs in homes are 7 – 8” rises.
Occupational Therpy
Occupational therapy is also important. For me, the OT person tended to show up after the PT and I tended to fall asleep on her.
• The most critical step in OT is using the toilet and the wiper assist.
• There is also a reaching device that can help you pick up things from the floor or pull on pants.
• None of the other devices seem to have continuing value for me, but you might find them useful.
Hygiene in General
Hygiene becomes additionally important, of course, to prevent infection. It can also be your best friend by making your skin feel better, refreshing you, and providing some babying.
Things that may or may not increase your interest in hygiene:
• I have always needed to wash my hair every day or so or I begin to hurt in the scalp and face.
• Since surgery, I have had a great deal of difficulty with temperature swings and sweats that soak me, particularly around the head. These are easing off as I approach three weeks post surgery, but I understand that I am not unusual in this.
• Bathing is a time to inspect the body. With the help of my caregivers, I found and addressed some surprises.
• The ritual of shampooing, bathing, and brushing teeth can be soothing. (It’s exhausting, too, but everything is.)
Modesty
Modesty is a pleasant social convention that can be ignored if doing so carries sufficient reward.
Skin
Until two weeks after surgery, getting the back wet is not approved. (Having the water soluble stitches dissolve early is obviously not a good idea.) OT assumption is that I would first soap and then rinse all but my legs and someone else would do the legs. I was spoiled and a caregiver did it all for me. Placing the potty chair in the shower made it safer than it would otherwise have been.
After two weeks, when it was okay to shower, my husband just showered with me. (Not the experience that we would have giggled over when we were younger, but a good sound answer and a deep pleasure of another sort.)
Hair
First step was a really short – and very good – haircut.
BJH (my hospital) supplied shampoo caps. Heat one in the microwave for 15 secs, put it over the hair and massage. The shampoo is included. There is no need to rinse. To our amazement, it worked magnificently. I couldn’t get both hands up to do the scrub, but I could talk my care givers into this marvelous treat. Some 24 hour periods, I managed to get two of these! We ordered more of these for after hospital release.
Once released from the hospital, we could put the potty chair thing in the shower and wrap me up to protect the back from getting wet and a care giver could wash my hair. The wrap consisted of a towel around my shoulders with a plastic trash bag (with a head hole) over that and another towel over it all. It worked.
This tremendous joy, but tiring experience, was replaced at two weeks with a real shower and shampoo.
Even after the shower was approved, twice in the late evening, I was itching from being sweaty and my husband provided another shampoo cap shampoo. YES! I have been spoiled.
<Ran into length limit ... to be continued>
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