Can't think of a good headline for this post

Hello friends and family.

We didn't receive the best news today so we could sure use all the prayers , positive vibes and good thoughts we can get. The day was foreshadowed early Tuesday morning by a visit from Dr. Yaszemski who gave Karl the worst case scenario. He told him the mass on his 3rd lumbar could be a metastatic tumor from his sarcoma two years ago and if that was the case, they would do a cryoabrasion of the tumor. That means they'd freeze it and get rid of it and then Karl would have to undergo chemotherapy again. The good news is that is a very small, 1 cm tumor. The bad news is that it is wrapped up in all the nerves again and could possibly lead to more loss of function. The worse news is that the biopsy report came back late this afternoon and it is, indeed, a malignant tumor -- a peripheral nerve sheath sarcoma as it was before.

Dr. Y, however, said the major concern right now was the decubitus ulcer. If they don't take care of it Karl could develop a staff infection, which could lead to his demise. The concern is that they need to remove the rods, pins and screws that harbor any kind of infection. Dr. Y doesn't believe the donor bones they put in two years ago have meshed with the lumbar spin and pelvis. That means Karl will have more loss of function.

Needless to say, we've all been pretty upset today with the news. The nurses and physicians have been hugging on Karl and Mom and have told them they will do their level best to do whatever they can for the best outcome. One by one they've filtered in to offer hugs and support. It's amazing.

In the meantime, Karl called this evening, very upbeat, to tell me an oncologist stopped in to offer him another alternative. He mentioned the cyberknife, which may give them the time he needs to heal from his decubitus. The oncologist said that because the tumor is so small, they have a 6-month to 1 year window and the cyberknife could give them just the right amount of time to get it done.

No concrete plans for surgery have been discussed with Karl, but we're sure it will happen sooner rather than later. We know Karl is in the very capable and caring hands and we're encouraged and hopeful.

We know you've been concerned and praying, but we know the more prayers Karl gets, the better off he'll be. We've seen it happen before and we know just how good God is.

Love and blessings,

Kerry

Holding steady

Today Karl had treatment #3 of hydrotherapy on the decubitus ulcer on both his rear and right foot. They have been working wonderfully. In fact, late yesterday afternoon when the plastics docs came in to examine him, they were VERY happy with how it had worked. It has been debriding the wound well and shows good signs of healing. They will continue this treatment another 2-3 days before they think about doing any kind of surgery to repair the wounds.

As far as his MRSA infection goes, this morning I asked Teresa, his physician's assistant how concerned we should be and whether the antibiotics were working. She said his white counts were good and she's very encouraged. She also said this morning that after consulting with the endocrine team, they think his pituitary and adrenal glands are lazy -- they aren't working because they don't have to. They think the additional prednazone and other steroids he's been getting have sent signals to those glands that they don't need to produce anything. So they're not. They believe before he leaves the hospital he probably won't need steroids. For the time being, however, they're going to keep him on them to help fight the infections.

We still have no word on the results of the biopsy. They said it could be 2-3 more days before they receive any word. I will tell you that aside from the pain Karl has deep in his back, he's very comfortable. He feels at home and very very confident in the care he's receiving. More caregivers Karl had two years ago stopped in today to visit him. They hug him and Mom and me, as well. Yesterday I was trying to track down his nurse for the day to tell her to have a good vacation (it was shift change) and just before I turned the corner, I heard his nurse from the night before ask her, "How's Karl today?" It's also interesting to note how many people show up when Karl has to be transferred from his bed to the gurney so he can receive his hydrotherapy treatment. Four people can do the job, but there's normally five or six.

Since we can't be near our family and friends for hugs and visits (and home-cooked food [and fresh vegetables from my garden]), I think we're pretty blessed to have the wonderful, caring staff at St. Mary's/Mayo Clinic. I thank God for them every day.

For those of you who read the blog regularly, I made the long journey home today. I was pretty torn about this decision, but with the encouragement of both Karl and Mom, I'm going on a golf vacation in northern Michigan with my husband and 3 other couples as planned. I will take a laptop and give blog updates, but they may not be as frequent. But please know we all appreciate your concern, prayers and love.

Blessings,

Kerry

Alone on a log?

Yesterday a friend emailed me a story about what Native Americans used to do to determine the right of passage to manhood. They would take a boy into the wilderness, blindfold him, and sit him on a log all night. If he removed his blindfold, he did not pass the test and was not considered a man. Imagine the noises he could hear and the fear he would have throughout the night. Surely there were beasts all around, but to pass the manhood test, the boy had to stay put and ignore his instinct to run.

As the morning sun hit the young man's blindfold, it was his cue to remove it. It was at that time that he realized why no wild beasts attacked him for there, sitting next to him on the log, was his father who had protected him all night.

God is just like that -- protecting us even when we think we're on our own. Karl can certainly bear witness to that fact, and I believe our trip to Minnesota this time offers even more proof.

Take today, for instance. Karl's heart rate was still a little higher and his blood pressure a little lower than normal. Teresa, the Physician's Assistant this weekend, was concerned about it and kept careful watch over it. It dawned on her overnight that he probably needed more prednazone because he was fighting some sort of infection or irritation. She doubled the dose and bingo, his heart rate dropped and blood pressure came back up.

She immediately asked for a consult with the endocrine docs. A short time later Dr. Stan and Dr. Norman came in and began quizzing Karl about various things, such as the color of his skin and scars along with his medical history. They said sometimes the pituitary gland will communicate his adrenal glands, causing them kick-start. When this happens, the chemical they send turns scars and skin darker. They did not suspect this happened, so they will concentrate more on the pituitary gland, but not until after Karl's wounds are healed and his infection is gone. They will then do a complete work-up on his endocrine system to make sure he has the right levels of medication. This will certainly help him in the long run.

Something we learned today but were not surprised about is the fact that Karl has the beginnings of a MRSA infection deep inside his wound. They told us in ICU on Thursday MRSA was likely, which is why they were giving him two different antibiotics. Of course we are very concerned because this infection is resistant to antibiotics, but Karl's nurse, Lindsy, said it was not uncommon and as soon as they identified the bug, they would be able to treat it.

Tomorrow will certainly bring a lot of answers. We should know the results of the biopsy. We may know what course of action they plan to take in terms of surgery. The fears we are now experiencing about what comes next will be replaced with new fears. But one thing that continues to comfort us is knowing that God sent Karl here. And we also know He's sitting on the log right next to him.

They're naming babies after him

The huge stained-glass archway at the entrance of St. Mary's Hospital. This has no significance to this post, but I thought it was pretty.


Karl was transferred to the 8th floor orthopedic wing today after his CT-scan and biopsy. They decided to anesthetize him for the procedure because it would have been very painful. When Karl got back to the room, he was still in a little pain, but glad to get back in his Clinitron sand/air bed. He was also surprised to be in the exact same room as he was two years ago.

Earlier today his ICU nurse, Tiffany, explained a few things to us. Nothing has grown from any of the cultures they've taken. They think maybe Karl was very dehydrated, which is what caused his blood pressure to drop and his heart to race. Yet they are still going to keep the cultures growing. Tiffany is cute as a button and expecting a baby girl on October 20, two days before Karl's birthday. Karl mentioned that he thought it would be nice if she named her baby after him. "You could name your baby Karla, Karlene or Karley." First she said if she had the baby on the 22nd, she'd consider naming it after Karl. Then she giggled and said, "I kind of like Karley, but I'm going to have to run it past my husband, of course." Only Karl could get a complete stranger to think about naming their baby after him.

Before he went to get the biopsy and scan, he also had an ECG while still in the ICU. The tech said his enzymes were a little off -- nothing to worry about -- and his ejection fraction was a little below normal, but that isn't surprising because his heart isn't necessarily being asked to do strenuous activities these days. I think they're doing it as a pre-surgical procedure...in case they have to do surgery.

The word "surgery" has been bantered about plenty these days, but there certainly have been no decisions made. However, they've talked about taking a flap of skin from his buttock to put over the decube next to it. They've also talked about whirlpools and wound vacs. Plastics have also talked about putting a flap on his right heel. Today Karl was told by the plastic surgeons that the bone in his heel was, indeed, exposed. Until they come to a conclusion about how to best tackle the problem, probably Monday after they've had time to analyze all his tests, scans and results, he's going to kick back and chillax. But we're praying Praying PRAYING the biopsy shows the mass is something benign and that a solution for Karl's issues can be found without needing radical surgery and recovery time.

I hope you'll all pray for the same.

Love and blessings,

Kerry

P.S. Mom got along okay today. Her knee's a bit stiff and sore, but the brace helped quite a bit. When Monday rolls around, we'll give Megan down in PT a call to see if she can recommend anything to help. In the meantime, she's still icing, keeping it elevated and braced.

Catching it early

I had a friend post a very appropriate Bible verse on my facebook wall today. It was, "I guide you in the way of wisdom and lead you along straight paths," says the LORD. Proverbs 4:11

Today, that was soooo true. At 10:30 a.m. local time, we walked onto the 8th floor to Karl's room to be greeted by a young doctor who told us Karl was being transferred to the intensive care unit on the 7th floor. His blood pressure had dropped, he was in a significant amount of pain and his heart rate was high. If you've been following Karl at all over the past few months, you know that's nothing new. But they weren't taking any chances.

Throughout the day dozens of doctors, nurses and techs filtered in and out of his room, starting with the charge nurse Gary, whom we remembered (and who remembered Karl from two years ago). He assessed Karl's decube and determined that it was likely infected. He repacked and immediately got the infection control docs in the room who quizzed us about all of Karl's allergies. We told them what we knew and referred them to Karl's nephrologist at the U. They came up with two antibiotics they thought would be easy on Karl's kidneys, which were still reading a 3.0 on the toxic creatinine scale. They were pumping him full of fluids and gave him a bolus of pain killer, which helped, but didn't completely get the job done. So they hooked up one of those buttons Karl could push, which of course, he pushed every 10 seconds just to see if he could get away with an extra one. We talked about free-basing dilauded, but Gary said it would set off the fire alarm.

Other than the pain and being incredibly tired, Karl felt fine and his humor was in good form. Throughout the day we talked about Big Time Wrestling, the new Filipino lead singer for the rock band Journey and of course, he got to tell all the nurses how horrible his mother and sister were for buying things with the Mayo logo while he had nothing with the Mayo logo and that he was responsible for our "vacation" and without him we'd have nothing, blah, blah, blah.

Of course all day they were trying to pinpoint the cause of this probable infection so they cultured everything from blood to urine. Then Andy, his nurse for most of the day, said they needed a sputum culture. Karl said, "Sputum?" "Spit," Andy said. "Spit?" asked Karl teasingly, knowing full well what Andy was asking for but egging him on. "Okay, Karl. You want me to get technical. We need you to really work one up. We need you to hock a loogie."

While nothing was substantiated during the day via cultures and other tests, doctors felt they had caught an infection very early. Karl's vitals were stabilized, his pain was regulated and he was finally able to eat as we were leaving. They postponed his CT scan and biopsy until tomorrow. They moved him into the Clinitron bed filled with sand and air that keeps pressure off his heels and bum. You could tell he was feeling much better.

While we know there are some obstacles in the way, we feel so confident about the care he's receiving and that the people there truly care about him. We believe we've been guided down the straight path. And for that we are so thankful.

Thanks for your prayers. Blessings to all.

Kerry

P.S. Mom could use an extra prayer...while getting out of her seat on the shuttle bus tonight, she twisted her knee. I think she may have messed up her ACL. I got her a brace and it makes her feel more stable, but she's iced it most the night and is walking very gingerly and with quite a limp. Hoping it's better in the a.m.

In the right place

The Mayo Clinic is an incredibly organized system with very friendly mid-western people all along the way. Karl checked in to the Charlton Building for an MRI at 8 a.m. Upon check-in they did a blood test. His creatinine count was a bit high (3.0) so they couldn't use the contrast dye, but nonetheless, they got it done.

In the meantime, Mom and I did some shopping at the little store in the Gonda Building. Then we returned back to the Charlton Building and a few minutes later, Karl appeared.

Then we went to the Hilton Building (named for its benefactor, Conrad Hilton) where Karl had more blood drawn. From there we headed to the Mayo Clinic Store where Mom and Karl both loaded up on bandages and other supplies.

Next we headed to the 15th floor of the Gonda Building to see Dr. Brogan. He is a young resident who talked about many different options including surgery to remove the rods and screws in Karl's back. He said they were put there until the donor bones put there two years ago could mesh in place. But he also talked about the enlargement of a schwannoma that doctors told us about 2 years ago. It's higher up in his back. At that time they weren't concerned. However, this time they are.

Dr. Brogan said it would probably be best to admit Karl so that the spot on his back could be biopsied and other tests could be performed. He told us it was a call for Dr. Yaszemski and that he'd be there to see us soon. Then he said something that I thought offered a pretty good explanation of why things are happening the way they are for Karl. He said, "Perhaps it was good it worked out the way it did. We were able to discover the spot early on. Who knows if that would have been the case just a few short months ago." That was so comforting. It seems like Karl's journey up and over hills the past two years has had many episodes of divine intervention.

In the 4 hours we waited for Dr. Y to show (we are not complaining...in fact, we are still so grateful he'd take the time to see us), Karl mentioned that he was not happy with us. He told us he didn't think it was very nice of us to go shopping without him when he was nice enough to include us on his "vacation." Through all of this, Karl's sense of humor astounds me.

Dr. Y showed up about 4 p.m. and told Karl he'd like to admit him. It would expedite testing and they'd be able to come up with a plan of action sooner. Karl agreed. They are concerned about Karl's antibiotic allergies, his low-functioning kidneys and the fact that he's on steroids, which slows the healing process. The blood test also revealed that Karl may either have an infection or something is causing an irritation. Infectious disease doctors and Dr. Mardini, who was Karl's plastic surgeon 2 years ago, will be involved in Karl's case. But through all of this, Dr. Y was confident there would be a good solution. Dr. Y also told us nothing would be done until at least Monday in terms of surgery because he is flying to Toronto where he will be speaking at a medical symposium. However, he'd be in to see Karl tomorrow. Then he gave Karl his cell phone number. Oh boy.

Karl has since gone on to tell us that Dr. Y also told him he'd like to have him over for Christmas because he knows our family doesn't spend much on him, that he'd like to have dinner and a few beers a couple times a year and that Karl is his new BFF (which is how he listed him on his phone). I'm sure this story will get bigger and better as time goes on.

We took Karl to St. Mary's about 6:30 p.m. local time. They were ready for him. In fact, it was the same floor Karl stayed for 2 months after his surgery 2 years ago. Two RNs there greeted him, hands on hips, saying "Karl, we're glad to see you, but not like this." Then one by one, nurses who cared for Karl stopped in to see him. It made him (and us) feel so good.

He is absolutely whipped and in a fair amount of pain, but I'm absolutely sure he's in the right place.

Thanks for your continued prayers. He sure needs them.

Love and blessings,

Kerry

You gotta have faith

Disclaimer: This post may contain graphic descriptions too sensitive for some readers. Please proceed with caution.

So much has happened with Karl since my last post in May. And I'm going to try to piece this together in chronological order, although I may be missing some parts.

Karl was looking forward to helping Jeff Neidermeyer with his bike shop and was planning on selling KHS bikes and had done all the research and read the marketing materials. He called me, excited about this new adventure and of course, talked about all the great features of these bikes. I was ready to buy! That night he got home and discovered he was bleeding on the right side of his bum. It was a bed sore, also known as a pressure ulcer, also known as a decubitous ulcer, also known as a decube.

I called my good friend Gloria who is an RN. She took a look and recommended Karl see his doctor at U-M. Karl scheduled an appointment and the doctor who was the attending physician while he was in the hospital, examined Karl and determined he needed to be seen by a wound care specialist, a plastic surgeon and home care. Orders were faxed to all three groups and we thought everything was going well. That was the first week in June.

The next week Karl had an appointment with his nephrologist, who said Karl's kidneys were functioning at 30 percent. Of course Karl and I almost had heart attacks, but the doctor assured us he could live for a very long time on kidneys that function below normal. He suggests Karl stay on prednazone to keep his adrenal glands functioning normally and off we go.

Gloria continues to check Karl's decube and urges us to call the docs. Karl called who he thought was the plastic surgeon. They said they never got the order, but worked him into the schedule. Turns out it wasn't a plastics person but rather a spine doc who specializes in wounds. She was very concerned about Karl's decube and instructed Mom about how to care for the wound. Twice a day Mom has to rough up the wound and debride (pronounced "debreed") it, taking away any dead tissue and causing it to bleed. The decube is approximately 1.5 inches in diameter at the suface and tunnels inward about 2.3 inches. The wound doctor says she wants home care to check in on him as well as plastics. She has her office staff fax in orders. It's the third week in June.

Gloria continues her three-times-per-week check (thank God) and says the wound is looking better, but it seems to be increasing in size. She thinks Karl needs a wound vac, but says the doctor needs to order it. In the meantime, Karl has not heard from home care or the plastic surgeon. Another week passes and finally, the plastics doc schedules July 22 to see Karl.

Karl's regular appointment with his primary care physician (PCP) is Thursday, July 8. The PCP looks at the wound, but doesn't unpack it completely. I mention a wound vac, but he doesn't think it's necessary. I also ask about home care and he writes orders (again) to schedule Karl for an appointment. He downgrades Karl's decube from a 3/4 to a 3. We leave, thinking things are looking up.

Gloria comes on July 9, unpacks the wound and sees that it has tunneled all the way to the rods that surgeons used two years ago to restructure his spine after they removed his tumor-laden sacrum. Not good. We decide to do an all-out blitz and Karl emails each of his doctors to see if an appointment with the plastics doc can be expedited. On Monday, July 12, Karl's appointment (which was originally ordered June 8)was moved to July 15.

Karl, Mom and I arrive at our appointed time. The medical assistant does the normal blood pressure/tempurature/heart rate thing and then a resident comes in. She measures the decube. It's now 2.5 inches in diameter and tunnels 3.5 inches deep...all the way to the metal in Karl's back. She tells us that the metal has to come out because it has been exposed to bacteria. We tell her it can't come out or Karl will fall apart.

The plastic surgeon comes in. He asks us the same thing...can the metal come out? We tell him the rods are screwed into his lumbar spine and then to his pelvis, literally holding the top half of his body together to his bottom half. He then says something like, "Well, that's why we'd like you to stay in-system. If you hadn't gone out of the system, we would have been able to talk to your orthopedic surgeons to come up with a solution, but since you went out of the system, we can't do that. I'm afraid there's nothing we can do. You're going to have to live like that."

Karl said, "You mean I'm going to have this hole in my butt for the rest of my life?"

The doctor, arrogantly and with no compassion said, "Yes. You're going to live like that for the rest of your life."

I thought it was worth saying to this sadistic doctor that it was not our choice to go out of the system...that the orthos at U-M couldn't do the surgery and they referred us to Mayo. I think probably this made him a bit angrier and he quickly made his exit.

Needless to say, we were all very upset. We were given no help, no suggestions, no hope.

On Friday the 16th, Karl called his surgeon at Mayo, Dr. Michael Yaszemski. Remember him? His medical secretary took all the information, and within 3 hours a doc called Karl. He talked about a wound vac and other possible treatments, but said they'd need to see Karl ASAP. "Would Monday, July 19 work?" Karl asked if it could be later in the week and the Mayo doc said he would talk with Dr. Yaszemski. Dr. Y, who you may recall is an Assistant to the Assistant US Surgeon General and a Brigadier General for the Air Force, would be in surgery all day Tuesday. "Would Wednesday work? He's leaving the country on Thursday and really wants to see you."

Between Gloria and Karl's fabulously caring doctors at the Mayo Clinic, God is present and taking care of him. Of that, I'm certain.

Anyway, Karl starts the morning with a CT-scan and MRI and then sees Dr. Y at noon tomorrow. I'll let you know what happens.

Blessings,
Kerry


Now faith is being sure of what we hope for and certain of what we do not see.
Hebrews 11:1