Why I have not been on in a while

As you may guess from the last post things did not go so well after the sugary.  Because of very serious inadequacies at the hospital (most specifically the 16th floor “observation Unit”) and failure of the hospital to listen to my husbands previous surgical experiences the hospital failed to put my husband on lasiks (a medication to remove excess water) and then when the realized he needed it(because he developed serious water on his lungs and could bairly breath and after they floundered wondering what to do he told them he needed it) then the failure to give him an appropriate amount. He took lasiks for a long time after his last surgery  and the amount they gave him after he already had water on his lungs was less than he had taken as a maintenance amount in the past.  The result was he just kept getting sicker.  It was not until he went back to the ICU that a doctor almost immediatly started getting better.

But overall our impression of this situation was horrible.    Despite telling Dr. Lenke the sole reason my husband wanted this surgery was because of his breathing he never mentioned until AFTER the half a million dollar sugary that there is rarely any improvement in adult sugeries like this, it only keeps it from getting worse.  Now lets be straight my husband has gone from a fully capable man  IN NO PAIN with occasional breathing problems during allergy season(because he only has one working lung due to the scholiosis)  to a man who is afraid to drive (because of the limited neck movement) and it is currently 4 months after surgery and we still are unable to sleep in the same bed (because he gets pain when I move in the bed) or have any marital activities(because of pain AND mostly because the muscle relaxants make it impossible.)

To make it worse the only time that Dr Lenke was actually present was the day of surgery.  He is a jet setter who cares more about conferences and presenting than his actual patients.

We had to head home to Georgia from Saint Louis in the middle of an icy fridged winter(below 25 degrees F during the day).  My husband was suppose to get out of the car every hour and walk.  But after the surgery he was extremely temperature sensitive and on top of that I was worried he would slip on the ice because he still had to use a walker, so I asked for a Temporary Handicapped Placard so he could go into stores on the way and do his walking inside .  THIS JURK said that it was in “his patients” best interest to WALK so he does not give handicapped placards paperwork.  He did not even listen to my reasoning, that this was so he COULD walk. but in a safe setting.  This idiot doctor is all about rules but he does not take the time to look at individual circumstances and THINK.  Because what may be 100% correct on a warm spring day, is  100% Wrong during a freezing cold winter with ice on all the parking lots and roads. Pregnant woman and People with FRIGGEN broken legs get a Temporary handicapped plate.  You are telling me a man with a full spinal fusion who needs a walker to get around can not have one.  This is a LAZY apathetic doctor who tries to avoid paperwork at all costs.  He gets rich of these surgeries but he can not take the time to consider their own individual needs.

To make it worse my husband lost his disability payments NOT because he does not have a right to them, but because DR Lenke refuses to fill out the paperwork.  He is very clear that my husband CAN  NOT go back to work.  But he thinks the paperwork is annoying so he refuses to do any paperwork “beyond short term disability”  Which in the case of my husbands company is only 13 weeks far shorter than the required 6 months.  We were not told this until after my husband was cut off because the doctor refused to fill out the paperwork for extended disability(13 weeks to 6Months).  Now my husband is pushing to go back to work early because we have no other income(the doctor will not give him permission so we do not even know if his boss will let him).  IT is nuts.

Simply put if you are satisfied with a Great surgeon who happens to be a apathetic to his patients needs, go for it.  But I am sure there are just as good surgeons out there who actually CARE about the well being of their patients.

 

Ok enough of my rant today I am working on a shirt  I hope to put out a blog tomorrow and I just wanted to finish up things first.

Spinal fusion Surgery Day

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 My husband is being wheeled off to Surgery

My husband started preparing for surgery at 5 am with an antiseptic shower.  Then he went to have a central line put in.  He was suppose to be in surgery by 6:30 but it took them longer then expected.  Once they got into surgery it also took them longer than usual to put in an arch line.  They both stated his unusual physiology made it difficult.  The nurse called to inform me the first incision was made around 9:30.   It is going to be one heck of a long day for Dr. Lenke.  If the surgery is going to take 8 hours that means it will likely be around 5 pm when they finish.   I am sure to some extent they figure putting the lines in to the 8 hour figure, so maybe it will not be as long as we expect.  But it will defiantly be longer than we expected all along.

I am very thankful My husband will be sleeping so he will not end up so tired.  I am on pins and needles waiting.  Before my husband had the halo placed he had a long conversation with the first anesthesiologist about his problem with his lungs after his last surgery.  Since this time my husband had to be put under to do his central line the nurses ask the standard questions to me and my Brother in law.  I just mentioned the lung situation to the anesthesiologist so he would be careful and keep an eye out,  He said he would keep a careful eye out and if his lungs got too bad they may have to split it into two surgeries.   My brother in law later lectured me saying I should not have told them that now they would be afraid to do the surgery.  He claimed that it only happened when he was a teenager and had the surgery in Pakistan, but my husband had clearly told me it happened in Boston.  My brother in law also said he had had 2 strokes not the one I know of.  He said he had the first one in 2002.  But I have never even heard of this before.  I met my husband in 2002 and I guess he could have not mentioned it fearing I would run away, but we have been married 10 years now so you would think he would have mentioned it somewhere along the line.   He never mentioned it when we were first admitted this time or at the hospital when he had the one stroke I knew of or in any of Dr. Lenke’s paperwork.  It is often hard having my BIL around.  He is very opinionated and I find myself holding my tongue.

My husband has always been very clear what his condition was with doctors.  Medical decisions should not be made based on half information.  He wants straight answers and the best advice.  Hiding information because the doctor may be afraid to do the surgery is foolish.  It is better the doctor be afraid and split the surgery in two to make it safer, then it is for the doctor to be unaware of problems and have my husband die on the table.  At least 4 surgeons have said no to my husbands surgery, because they admitted they were not skilled enough.  I know he would rather have a surgeon walk away than die on the table.

This is not a prize or a game, it is my husbands life.   Doctors ask questions because they need to know.  It is like drug addicts going in for surgery and not telling the doctor about their addiction for fear they will not give them pain killer.   When there may have been non addictive pain killers that would have worked and if not the amount of medication given may need to be adjusted and doctors will know they will have to deal with withdrawal before the patient is released.  They may get out of the hospital craving pain killers just to over dose and die later, or on the other side,  because the doctor is unaware they have built up a tolerance they may not be given an appropriate amount so they may wake up or have complications on the operating table.    Hiding medical information because, as my brother in law says, “doctors have to have a sense of confidence” is absurd.  False Confidence Kills!  I would rather have a doctor fully aware and err on the side of caution then to have them rush in head long unaware and have my husband die of pneumonia.

I love my BIL because he dearly loves my husband, but we rarely agree on much.   It is one of those love/hate relationships.  I am doing my best to keep my opinions to myself for my husbands sake.  And maybe this blog is my way of saying these things instead of telling him off and saying he is wrong.  My husband made a HUGE big deal about his lungs to the first anesthesiologist going as far as to question him on what would be done. I was shocked at how much my husband questioned him about the situation and how it is normally dealt with.   In fact the anesthesiologist was so thoughtful about it he brought in his wife who was actually scheduled to be my husbands anesthesiologist for the spine surgery (but that was changed when the surgery had to be rescheduled)  to meet him and answer some of his questions.  I did not go nearly as far as my husband did, I simply mentioned it when asked if he had any difficulties with anesthesia in the past because I knew he would have wanted it mentioned.

I want to say all this to my BIL, I want to say he is wrong, that the more information the doctors know the better they will be able to handle my husbands case.  But I keep my mouth closed and take his lecture, all the while knowing he is wrong.  I just remind myself what I told the kids growing up.

SOMETIMES IT IS ENOUGH JUST TO KNOW YOU ARE RIGHT!  What is right does not change because other people disagree with you.  And sadly the people who are the loudest are often the most incorrect.

Night before Spinal Fusion Surgery

We are now on the count down to Spinal Fusion Surgery.  At Midnight my husband goes off heprin  and can not eat any more, at 5 AM he has to show with antiseptic and then at 5:45 he leaves for surgery.  His surgery will last around 8 hours because he is basically having full spine fusion with the exception of his neck.  T-1 to L-4.  they will determine weather they have to fuse below L4 during the surgery but that would effect his hips so they are avoiding it.

They surprisingly changed him rooms this evening, strange since he will go to ICU after the surgery so he will not come back to a normal room for a few days.  But it is a much nicer room so we are not complaining.  Even a nice couch for me to crash on as I am writing this.  Much better than the recliner in the other room.  His brother and I went out and got him his favorite foods and we sat and had a nice dinner at 9:30 PM.  Now he is sleeping, resting up for the big day.  I have been able to control my nerves right up until now, but I am struggling now.  What if something goes wrong?  What if he never wakes up? 

I have my Faith to hold me through.  I know everything will be as God wants it to be, weather I see it as good or not.  Alhumdulillah, All Praise is for God.  What he creates will always go back to him, and only he decides when. 

He will likely be in the ICU a minimum of 24 hours and likely longer.  So things will change a lot.  We will be spending a lot of time in the family waiting room instead of a room.  Likely spending nights back at the apartment, as ICU visiting hours stop at 9 PM.  It is all in Gods hands now, so prayers are very appreciated..

Halo Traction Day 17 getting ready for Fusion

This has been one of those weeks to tell your Grandchildren about if you were not afraid they would think what you did was cool and try to repeat it.  I have not been blogging for a while because the kids came to St Louis over Winter break, and my brother in law came in from Canada.  So between time spent at the hospital, time spent with the kids and everything I really just do not have time.

The weather has been horrable to say the least.  We have been having a historic cold spell, with the Northern US having lower temperatures than Alaska.  As my children’s winter break came to an end I had to drive them back to Georgia and then turn right around and rush back to be on time for my husbands fusion surgery(It had been scheduled for Thursday but was delayed).  So silly me I head out driving from Atlanta to St. Louis on one of the coldest days is history with temperatures in the negatives.  With windchill most of the way was around -10 degrees F.  The drive was actually great until I was about 2 hours from St. louis.  It had gotten 10 inches of snow the day before and the highway was still icy.  The snow on the 57 was so bad it looked like a car graveyard.   There were hundreds of stuck cars all along the way.  I just kept chugging along at 25 mph and it took me two hours to drive what should have taken about 45 minutes.  I was amazed by all the semis driving in the fast lane which is a SOLID sheet of ice.  They were driving along at 65 like it  was just another day.  At the same time you could see semis jackknifed at the side of the road.  How foolish can people be.  It was a nerve wracking 2 hours but I arrived without incident to the shocked hospital staff, who were working short staffed because so many people were not able to get to work due to the road conditions.  And here I managed to make it from Georgia.  I must be nuts.Aftab Desk

As time went on my husband adjusted to the traction.  Here he is sitting in the traction wheel chair surfing the internet in one of his clear headed moments.  He kind of goes back and forth.  He will take his pain meds and be groggy and bairly able to stay awake, then as the meds wear off he will be just like normal for an hour or two.  But then the pain will get to him so he takes the medicine again and is back to the groogy man.    It was painful at times.  His regular Dr Lenke went away for Christmas holidays and ended up getting stuck in Denver due to weather.   So my husband was left in the hands of the “fellows”  which are people who are studying the specialty.  And sadly they were not as kind as they should have been.  One of the fellows insisted my husband keep the total weight (which went up to 23 lbs)on 24 hours.  Dispite the fact I had read in the book Dr. Lenke gave us that they reduce the weight at night.  I even asked him one morning if it could be reduced at night because he was not sleeping.  They reduced the total weight to 20 for a day and then went back to 23.  This resulted in him having to take more meds  and him being a groggy uncomfortable mess.

Thankfully Dr. Lenke came back on Tuesday and lowered his night time weight to 10 lbs.  He is now sleeping well, thank God.  The surgery was rescheduled for Monday, as all of Dr Lenke’s patients had to be put back because of his late arrival and staff shortages at the hospital due to the storm.  Since today is Saturday, we only have one day to go and then he goes to preop at 5:45 on Monday.  Today I took a much needed extra time to rest.  My brother in law and I have been taking turns sleeping at the hospital in my husbands room.   Today was my night to stay at the apartment and I admit I dragged my feet coming in and did not get here until 2:30.  I took a little extra time making cookies for the nurses.   I just needed a little extra “ME” time because I know that this will be my last opportunity for a while.

If you or anyone else is going in for Halo traction or any other long hospital stay, make sure to have someone else around.  The nurses will do their best to help the patient but the fact is they have a lot of patients and really can not do much.  Having a family member who can run home and get a favorite food, comfy sweater or pajamas to wear is a God send.  The hospital has little to offer.    The nurses are on a tight schedule and patients are often not in a shape to adjust to that schedule.  For example when the nurses come in and want my husband to shower and change his clothes, he often is too groggy from the pain killers to do so.  For three days he did not shower or change his clothes and each time he would wake up later in the day and wish he had.  Finally I just asked the nurse if it would be ok if I showered him when he woke up a little and she said fine.    A personal caregiver will make a world of difference.

So God Willing Monday is the big day.  We are told he should be in ICU for 1-2 days after the surgery.  So we are expecting he will not be in a regular room until Wednesday morning.  We will be on pins and needles until then.

Hospitals-Too Big, too Contracted, too impersonal, too deadly.

As You may know if you have read my blog my husband is currently in the hospital undergoing Halo Traction before he has Spinal Fusion surgery on the 8th of January.   This visit to the hospital has been eye opening and a little scary, very much like our last visit to the hospital 10 hours away.  Now let me be clear I have been around enough to know this is not a problem only at this hospital, but at all hospitals.  So I an not going to list the name of the hospital in this blog but you are welcome to look at days past and see the name if it is that important.  But all you really need to know is this is a HUGE hospital like so many prestigious institutions around the country.

Far too many Hospitals have become far too big to provide quality care.  There is a balance in being big enough to have the latest and greatest equipment but not so big that you are unable to provide for the needs of your patients.  Sadly most hospitals have gone for the bigger is better approach and are way beyond that balance.  In order to deal with being way too big for their own good hospitals have begun to contract out services they used to provide for them selves.

Food services is often the first and most deadly to be contracted out.  Food can have a very powerful component in healing and health.  The fact is every patient has different nutritional needs based on the medication they need and the type of service they require.    A few years ago my husband had a stroke and he was put into a medium sized hospital that had in house food service. It was not a small hospital by any means but it was also not a mega hospital like the one he is in today. He did not have a lot of choice in food, but his diet was tailored to him personally.  Not only that but we actually met with a nutritionist at the hospital that made recommendations on how to improve the efficiency of his medication.   They were aware of his medication and his needs and provided food that would enhance his health and the result is got out of the hospital faster recovered quickly and made a 100% recovery.

Due to my husbands complex surgical needs, this time we were forced to go to a huge hospital with a severe spine center and the first night we noticed the SERIOUS and dangerous difference.   Below you will see my husbands dinner looks OK right?  They have my husband listed as a ” Regular Diet”.

But lets look at the facts, My husband is on Coumadin.  He has an artificial mitrial valve and heart Palpitation. He had a stroke 3 years ago at a INR of 1.6.  At the time he was given this meal, his INR was 1.9(His INR went crazy due to traveling and at first went to high and then went low when he skipped a does to bring it down).  His target range is 2.5-3.5.  And yes that is a huge serving of Broccoli.  Any cardiologists out there screaming!  Now lets get worse in the next 5 days my husband was given Broccoli 3 out of 5 days.

A dinner

For those of you who do not know about Coumadin, vitamin K and stroke, you may not see any problem with this picture.  But people on Coumadin are told to avoid foods that are high in Vitamin K because it basically cancels out the effect of Coumadin.  And since my husband was out of range and already at risk for a stroke, it would make it especially important that he not eat any foods high in Vitamin K.  When I mentioned it to a nurse I was told “they do not put enough to effect the medication.  But As you can see, it is in fact a large serving.   And small changes in the diet of a Coumadin patient can mean a big change in INR.  I suspect based on past experience, that if my husband would have eaten this his INR could have dropped as much as .5.

Now do not get me wrong, I do not hate Broccoli and other green leafy vegetables( In fact I very much enjoyed eating the broccoli FOR my husband).  Broccoli is a very healthy food for most people. Broccoli and ranch dip is one of my favorite foods.  S  It just so happens that a person on Coumadin due to  an artificial mitral valve and palpitations is not “most people”.  INR can be the difference between life and death.

I also can not complain about the choices, because once a patient is out of recovery and is clear minded, the hospital offers a few selections to choose from.  Though admittedly the vegi selection is limited to Broccoli, carrots and green beans.  The smaller hospital offered no choices, and that is not all that great either.

My issue is that food service is no longer a part of the treatment.  In extreme cases there will be a restricted diet, but they seem to drop the ball when it comes to specific medications like Coumadin.  Depending on the patient to know and not eat food that will react with their medications.  I can not help but wonder if it would be different if he were in the Cardiac wing instead of the  Ortho wing.  I have also noticed a bit of disconnect when it comes to coordinating care.  The in hospital Cardiologist that my husband was referred to handle his pre and post operative issues has not consulted once since my husband entered the hospital a week and a half ago, despite the low INR.

Day 5 of Halo Gravity Traction

Today is day 5 and my husband is understandably grumpy, not the kind of grumpy you see in most people.  Most would call him calm.  His way of getting grumpy is to not talk.  He gets exceptionally quiet.   He is not answering phone calls.  He just sits quietly most of the time.  Talking is too much work.  Pretending to be OK for the sake of others takes too much work, so he just gets quiet.  Overall he actually seems to be doing great considering the circumstances.  Nurses say he is tolerating it better than most patients.  He really is trying to be calm he is just quiet.

He asks for what he wants but not much else.  Sleeps most of the time.  He spends a good deal of the time sleeping sitting up in the chair, but he makes an effort to get up in the walker at least twice a day.   He was thinking he would have so much time in the hospital to read and do things, but he finds he can not.  He can not maintain his concentration in anything.   He starts something and then falls asleep right in the middle he is on so much pain medication he really can not think right now.  I love him so much.

One of the nurses came in and was saying how happy he seemed and I laughed and said he was actually grumpy.  Her answer was if this is his grumpy she wants to know where to find one like him.  And it is true, My husband is amazing, his grumpy is other people’s normal.

We are truly a blessed family to have him in our lives.

Better day

Traction is going a little better today. He is up to 9lbs but he is taking pain killers. He is just not himself most of the time.  He was out in the walker contraption today
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At least he is taking the pain meds and not just bearing the pain. He is vary serious about not taking pain unless he needs to. He delays most times untill he can not bear it.