Today at 1:15 pm, our beloved Bill left this earth to be in the arms of our heavenly father. After a fiercely courageous battle that was long and difficult, his passing was quiet, peaceful and he was surrounded with love.

Visitation will be on Wednesday August 15th from 2-4pm and 6-9pm at Nie Funeral Home on Liberty Rd. In Ann Arbor Michigan.

Funeral Services will be on Thursday August 16th at 11am.

Please visit http://www.niefuneralhomes.com after Sunday evening for further details.

We continue to be humbled by the love and prayers that keep us going and we are so grateful.

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Moving up

August 2, 2012

Well Bill has graduated. After 7 weeks and 2 days in SICU the powers that be decided that it was time for him to move to the long term care floor.

It wasn’t the easiest move. Someone described it as “moving from a Ferrari to a Ford.” Absolutely no offense to Ford and not my analogy.

Nothing else has changed too much. He is still trying, with varying degrees of success, to wean off of the vent and is working so hard.

He is feeling about how you would expect him to feel at this point.

Continued thanks for all of the prayers and support. We wouldn’t make it through this without you!

FINALLY Good News!!!!

July 16, 2012

Last time I wrote things weren’t looking very good and we weren’t given a lot to hope for. We were all just trying to understand what was happening and try to manage one day at a time. But little by little and day by day, with a fiercely persistent physician and an iron Will(iam), things have started to turn around.

First, the medical team started to pack Bill’s wound, the area where the fistula is, the leak, differently, They started to use a dressing that has silver in it to help manage the infection. And they started to pack it more tightly, with a lot more packing material and sure enough, the leak has slowed down. With less air leaking out it became easier for Bill to breathe.

Second, he got a new trach. The “talking trach” never worked very well. Not only was he not able to talk, but it was positional and uncomfortable and seemed to make him cough more and have violent bronchospasms. Once the trach was changed, he became more comfortable and his perception of how much air he was getting improved.

Since then he has gotten stronger and stronger every single day. The doctors and respiratory therapists have been able to slowly lower his ventilator settings. Yesterday he was able to be OFF of the vent completely for 13 minutes in the morning and for 20 minutes in the afternoon. At night his settings are higher for the time being. He is walking for longer and longer periods of time each day and getting outside for a few minutes at a time when the weather is nice.

Weaning off of the vent isn’t fun and of course there are still a few mountains to climb, but Bill has already shown that he’s a badass with no intention of backing down! There isn’t a timeline or a set list of events that we can plan for or look forward to, but he wants to get up north before summer is through and every day he is closer and closer to making that a reality.

Please continue to pray for him. He is in a very critical and difficult period of rehab and he is so homesick. Despite making giant leaps forward he is sad a lot of the time and needs as much cheering on as he can get.

We continue to be overwhelmed with the love and support from all of you. A few weeks ago Bill was telling me that it is hard to feel that God is really here, that he really cares. But even when we cant feel it spiritually, we can SEE it in the love and kindness of so many caring friends and family. It reminds us that his love is always there. Thank you for reminding us every single day.

God Bless and Love,

Lara

Breathing hard.

July 6, 2012

It know it’s been a while since I posted an update, but changes and developments have been slow. Truthfully I was putting it off until I could post some good news.

So Bill got the trach, the goal being to wean him off of the ventilator and onto a bipap machine that could be used at home. Right away he got started with some activities. A shower one day, a trip outside the next, a walk on the unit. He even started a little physical therapy. But as time went on he became less and less able to tolerate activities without becoming fatigued, short of breath and the ventilator settings were steadily needing to be bumped up to higher degrees of mechanical support in order to keep him comfortable. He was trending downward.

The neurologist who specializes in treating Myesthenia Gravis told the surgeons that it might be better to slow down his activity level as too much could set him back. So then we had a period of minimal activity. In the meantime he got his “talking trach”, but he has such a large amount of secretions that he hasn’t been able to use it effectively.

After a few days of minimal activity we tried to get him moving again. And once again, Bill wasn’t able to tolerate much movement without requiring more ventilator support.

Right now there are a lot of different problems that the doctors are trying to address, including several infections, secretions, anatomical problems that interfere with breathing, strength, malignancy, Myethenia gravis and I could go on and on. But the primary issue is the bronchopleural fistula. The area of his left upper lobe, that was destroyed by invasive aspirgillosis, has air leaking out where there used to be healthy lung tissue. There is no way to repair the fistula. So when he breathes, it’s kind of like trying fill up a bucket of water but there is a big hole in the side. You can keep pouring water into it but if the hole gets too big the bucket will never be full.

The ventilator can give Bill a big breath, but so much air is leaking out of the fistula, that he can’t keep up.

Yesterday Dr. McCabe tried to place a stent to block off the airway leading to where the fistula is, but his anatomy in that area is so altered as a result of the Aspirgillosis and his surgeries from 2006 that the stent won’t stay.

Right now no one is giving up! Dr. McCabe was able to do some things in his left lower lobe yesterday that might help improve some of his lung function, which will give him some more to work with (like giving him a bigger bucket). We are going to try and increase his activity again and try to help him gradually build up some strength. He is on an inhaled antibiotic to treat a new infection in the bronchial area. He has started some medicine that is helping to decrease the amount of secretions that he has, which will make him more comfortable and less likely to develop pneumonia. His tube feedings are being increased to try and stop his weight loss. There is one other avenue being investigated, regarding a special valve that is experimental. The doctors seem skeptical that Bill will qualify because he has so many different problems but they feel it is worth asking the physicians who have used these types of valves before. Something to give us some hope.

Bill is a fighter. He is the strongest and most courageous person I know. For 6+ years now he has fought with every once of strength that is in him because he wants to LIVE, to enjoy life and be around for us, his family. He is blessed with a family that loves him, friends and colleagues who have shown INCREDIBLE caring and love to all of us, an army of prayer warriors who are lifting him up everyday and a physician who won’t mind me calling her a “f***ing Marine” when it comes to doing battle beside her patients.

Don’t count him out yet. But please keep the prayers coming!

Thank you so much to all of you for all that you have done to help keep us going and to make life bearable, and at times even wonderful, over the last several months.

“Then your light will break forth like the dawn,
and your healing will quickly appear;
then your righteousness[a] will go before you,
and the glory of the Lord will be your rear guard.
Then you will call, and the Lord will answer;
you will cry for help, and he will say: Here am I.

…Surely the arm of the Lord is not too short to save,
nor his ear too dull to hear.”

Isaiah 58:8-9, 59:1

God Bless and Love,
Lara

Post-op Note

June 20, 2012

Sorry for the delay in posting, I know I promised to write after the surgery on Tuesday but it just got busy and I was too wiped out at the end of the day.

Bill’s surgery went very well. There were no surprises and no complications and he feels soooooooo much better with the trach and the vent than he did with the bipap mask. The mask was so obtrusive it was like a wall between him and everyone else and I think he kind of feels like he’s “back”. The rest of us certainly feel that way. He can’t talk right now but in 4 or 5 days he will have a “talking trach” that will make it possible but eating or drinking is still out. Up next is just to stay out of the woods, avoid setbacks and prepare to work hard at getting stronger. The process will be very long and take a lot of patience on all of our parts and he’s a long laundry list of big problems and potential complications but Vita thinks he can do it. The rest of us KNOW he can do it.

Just prior to the surgery we got some good news/bad news. A large percentage of people who get thymoma have a condition called Myesthenia Gravis. It is an autoimmune disease that affects, among other things, chest wall muscles, causing weakness and loss of function. In the distant and recent past Bill has tested negative for the illness and has shown no clinical signs (based on exams by neurologists) of having the disease. Even as recently as a week ago. But they repeated the antigen test for it and it came back positive, and another physical exam revealed some clinical signs. The bad news about this is that he now has ANOTHER incurable and debilitating illness that makes the management of his other problems more complicated than before. The good news about this is that Myesthenia Gravis is controllable with IV immune Globulin and is a good explanation for his chest wall weakness. Before the MG diagnosis we had no good explanation for his need for ventilation and now we do. Now that we think we know the cause we can work on treating it and hopefully getting him better.

So that is the update. Yesterday his spirits were GREAT!!! But he was still under the influence of anesthesia and today he was more uncomfortable and frustrated. Getting used to the trach isn’t going to be easy. But he made it into the recliner and this is a step forward.

Thank you again so much to so many for all of your support. We love you and are so grateful. We are stronger because of you:))

Latest on Bill

June 17, 2012

It’s been a long 8 days in ICU and I wish I could say that things are better or that he will be getting out of here soon, but not so much.

The problems that brought Bill here, a low sodium level and a high CO2 level were corrected fairly quickly. But his ability to breathe, to make the muscles required to take a deep breath work has continued to be a problem. He has been ventilated with a bi-pap device (kind of like a C-pap just much more powerful) that uses positive pressure delivered via tightly sealed mask, to force air into his chest. For a few days he was trying to wean off of the bipap machine and onto a high flow pressurized oxygen device but so far it hasn’t gone well and he becomes fatigued quickly and needs to go back on the bipap. He has also developed a “grade 4” pressure sore on his nose from the bi pap mask.

For the last 2 days he has been getting progressively more exhausted and the thoracic surgeon feels it is necessary to do a tracheostomy. She also wants to be able to get a closer look at his upper airways to determine whether or not he may have some Aspirgillosis infection extending beyond his chest. This will happen on Tuesday afternoon. In the meantime, if he continues to become progressively more fatigued, she may need to place an endotracheal tube until she does the trach.

Physically he is very weak, not really in pain but uncomfortable. He has tubes everywhere and even small position changes require 20 minutes of adjustments. Mentally he is totally depressed and frustrated.

The rest of us are kind of strung out and trying to “just keep swimming”. But we try to do something fun as often as we can and make the most of opportunities to be together. I’m ok, but behind on sleep. It is usually late at night after I have come home from a long day at the hospital when one or more of the kids needs to talk or cry or ask questions. These are precious moments that mean so much more than a little sleep. I will catch up eventually.

Thank you, again, to all of our friends and family who are doing so much to support us through this. The cards and well wishes and funny videos that Bill received for his birthday made him smile, not an easy thing these days. And of course thank you for your prayers. You make every day easier and give us a little more strength to keep on going.

And a special note to Bill’s friends from Toyota…Your visits last week had an amazing effect on him. It motivated him more than anything else to willingly remove his bipap mask for short periods of time. You all lifted his spirits and we are so grateful.

I will try to post again on Tuesday evening after the Tracheostomy is done.

God Bless and Love,

Lara

Certainly I shouldn’t be waiting until things nosedive before posting. For this I apologize but Bill was doing so well that life was nonstop crazy with the good kind of busy.

Right after my last post, Bill was discharged from the hospital. He went home on lots of medicine, including IV antibiotics, oral antibiotics and an antifungal (among other things), but no oxygen. Just the challenge to learn to live with the “man hole” (thanks Beth, that one stuck), learn how to pack it and dress it properly, manage the meds, manage the feeding tube, take a walk or 2 a day. But no oxygen and no chest tube. For a week he did GREAT, I was back to work and by the end of the week we were able to go, all 5 of us, to see The Avengers.

But at the end of that good week, he started to take a turn. It was the day after his last dose of IV antibiotics. He very gradually started having difficulty breathing, feeling like he couldn’t get enough air and started coughing again. His oxygen saturation was steady at acceptable levels but he felt “air hungry” and he started using his oxygen without much relief. He started having a lot more difficulty sleeping so we bought a big (ugly) recliner so he could be upright, but it didn’t help. He just felt like he was suffocating. At some point last week we restarted the IV antibiotics, thinking this was what seemed to change things, but it didn’t seem to make much difference. Finally this past Saturday we went back to the hospital. By that time he had a splitting headache, could hardly stand up, and was taking big gasping breaths and he hadn’t slept in days

When we got to the hospital the first big problem they identified was that his sodium level was critically low, so that was being addressed. A few other tests were being done as well, but his chest X-ray and chest CT were ok. They gave him some dilaudid which calmed him down a little and cranked up his oxygen so that his breathing was a little less labored.

I went home to get some sleep and when I came back to the hospital what I found was totally shocking. Bill was disoriented, confused and agitated. He didn’t know who I was, looked at me like I was a total stranger and didn’t know where he was and was trying to get out of bed but kept saying “I have to get into the bed”. I got hysterical, crying and demanding that the doctor be paged, telling the nurse and the PA’s that something was VERY VERY wrong with Bill. That got plenty of attention (I think there were 3 PA’s, 2 Nurse Practitioners, and 3 nurses in the room. and a respiratory therapist. Hysteria can be very effective sometimes. And gratifying too). They did a blood gas and found that his CO2 levels were extremely high, so he was moved to ICU and put on bi-pap. For most of the day he slept and by late Sunday night he was starting to wake up and try to pull things off but at least knew where he was. He doesn’t remember why he’s in the hospital or what led up to being brought in. He can’t talk much, his face is mostly covered by this huge mask that’s forcing air into his chest, but when he does speak he says things like “I want to go home” and “WHY???”

His sodium and CO2 levels have normalized, but when the bi-pap was turned off and he was put on a regular oxygen mask, his feeling of air hunger returned, he became very short of breath, panic-y and agitated again and asked to be put back on the machine.

We don’t know why he is having such a hard time breathing or why his sodium levels dropped to such a dangerously low level. These are questions that will have to be answered before he can go home. In the meantime he just has to keep breathing by whatever means possible.

How ARE we? I don’t know, we are ok, exhausted, frustrated, scared, pissed off. There’s so much love from friends and family, so many ways that we are richly blessed that it seems wrong to complain so I won’t. I have decided to give up trying to work and will be taking an official leave of absence, so life will be a little easier for the kids. and for Bill. and for me too.

Thank you from the bottom of my heart to all of you for all of the cards and notes and wonderful meals and big welcome home signs and times that you have come to our rescue! and PRAYERS!!!

God Bless and Love,

Lara

Exceeding Expectations

May 24, 2012

Hello everyone!

This will not be a long update but certainly a good one. Bill is doing great, really great. He was moved out of ICU a few days ago and has had his central line, foley catheter, chest tube, arterial line all removed. All that remains is a PIC line that he will have when he comes home for iv antibiotics and his feeding tube. No more IV pain medicine and he is beginning to wean off of the oxygen. Today he got to go for a walk outside and sit in the sunshine for a little bit and it did good things for his spirits.

Yesterday afternoon was my first time changing the packing out of his chest and putting on a new dressing which was pretty freaky but I got through it. I can look down into his chest and see the edge of his heart beating and the surface of his lung. He could hide a lot of stuff in there if he wanted to. Though it may be a while before he is back in full swing, it won’t be long before he will be able to go out without being attached to anything.

The best part is that he is getting WELL. The antibiotics, the opening of the empyema and the improved nutrition are all making a huge difference. His color and his eyes are looking so much better and we are all feeling a renewed sense of hope and trust that he’s going
to get through this.

It is amazing that what started out being such awful news has all been so much easier than we thought it would be:) God is Great!

Continued thanks for all of the love and prayers.

These were Bill’s first instructions from his ICU nurse today when the lights in the ceiling were shining into his eyes.  Nurses have a sick sense of humor sometimes.

The last few days have been fuzzy.  Lots of prayer and good talks with the kids.  Time looking over information about the operation, which actually helped since what you don’t know is always more frightening than what you do know.  What I think both of us will remember most is how we felt so completely surrounded by love and prayers.

Today started out a little rough.  Bill hadn’t slept a wink and the enormity of what was going to happen in surgery and how it would change his life, our family’s life, was really weighing on him.  Mercifully his surgery time was moved up, and he was on the good drugs, 3 and a half hours ahead of schedule.  God is good.

The surgery went extremely well.  He now has a feeding tube and a nice size “blow-hole”, “trap-door” or whateveryou want to call it.  (any other suggestions for what to call this thing will gladly be considered) It’s smaller than what Vita initially described and she was able to preserve some pectoralis muscle that can maybe be used in a year or 2, if things have settled enough that she wants to close it up.  But the drainage on the inside of his chest got mopped up, the chest tube is out and there were no complications whatsoever!

So now we continue antibiotics to treat the infections, begin working with the feeding tube, begin wound packing and dressing changes (under sedation), manage pain and keep him as comfortable as possible.  Dr. McCabe made no promises about how long it will take for ANY of these things to be accomplished  but she is very confident that Bill will recover and eventually be able to live “normally”.  Now I don’t think ANY of us knows what “normally” means but we get it. 

At this moment he is getting plenty of pain medicine and resting comfortably, but is lucid enough to know that I’m here and occasionally make (dumb) jokes.

Those are the highlights.

Well those are the details…

The highlight…

In all of the years that we have been dealing with one medical drama or another, be it cancer surgeries, chemo, radiation, recurrences, Mary’s back surgery etc….there has been an incredible outpouring of caring and prayer, but we have never felt the degree of love and support as we have experienced over the last couple of days, mostly in the form of prayer and words of encouragement.

For the last several weeks, but especially the last several days, knowing that so many friends near and far, some that I haven’t seen in 25+ years and some who have been praying for us for so long that they’ve got to be getting tired of it, knowing that so many people have been moved and gone to the Lord on our behalf AGAIN just makes my heart want to bust!  To be on the receiving end of so much caring is an amazing experience and EVERY SINGLE prayer has meant so much to us.

How can we ever repay this?

From the deepest most bottom of my heart,

Thank you!

God Bless and Love,

Lara

“Behold, I am the LORD, the God of all flesh; is anything too difficult for me?”

Jeremiah 32:27

 

 

 

 

More Surgery

May 16, 2012

Hi,

This will be the worst blog post I have ever had to write.  What is happening to Bill next is so unreal that it is going to sound like science fiction and we are all having trouble getting our heads around it….

The newest problems, in addition to the presence of new malignancy, invasive aspirgillis and pulmonary psuedomonas are a pleural empyema and a bronchopulmonary fistula. I don’t even know how to say this in english.  Basically he has severe life threatening infections and airspace disease that is monumentally complicated and difficult to treat.

The only treatment with a possibility of cure or a that will give him a chance to have any cancer treatment is a radical procedure called a modified eloesser flap.  Google at your own risk it’s like a horror movie.

The surgeon will make an opening (they call it a “blow hole”) in the front of his chest, by removing 3 ribs and the chest wall and wrapping the skin, tucked under the inside edges.  This will create a large opening in the chest which will allow the infected fluid to drain out and provide a way to get antibiotics and vacuum sponges and irrigation directly to the infected area.  But it will be a large opening, maybe like 3 x 5 inches and when his dressing is off you will be able to see inside his chest and see his lung.  Really. 

It will allow him to be done with the chest tube and once he gets past the initial infections(? when)  and his pain is managed(? when) he will be able to put a big bandage over it and live life.  He will be able to go to work and walk around like a normal person. Eventually.  That is the goal. But the opening in his chest will be permanent.

So the big day is this Friday, scheduled for 3pm.  He will be in ICU for a little while and is expected to stay in the hospital for anywhere from 7-14 days.  He has been told to expect it to suck.  Many potential complications and major amounts of pain management required.

Truthfully we are terrified but it doesn’t look like there are any other options.  I’ve known Vita (our surgeon) for 5 years both when I was her patient (and I know I might have died were it not for her) and as a colleague.  I’ve seen the way she manages extremely complicated medical disasters that would send other surgeons running for the hills and I have no doubts about her being the right doc.  I’ve also reviewed enough literature to know that there truly aren’t other reasonable options.  I’ve had people suggest getting a 2nd opinion and as valuable as I know that can be, we are kind of out of time.  The pseudomonas isn’t slowing down and getting into another Thoracic surgeon anywhere near the caliber of the one we have would take weeks. 

Please please keep praying.  I wish I could say more about how we are doing, how we are feeling but we don’t even know how we’re feeling….we’re still trying to get our heads around it.  And I look into Bill’s face and into the kids faces and hear Mary’s voice and I know that they (we) are all trying to process so many different emotions….its just overwhelming.

We continue to be blessed with so much love, so much support and so much prayer.  Thank you to all of you we are so grateful. 

God Bless and Love,

Lara