Karl/Mom are Home! Arrived 9/5 @ 9 pm. More after 9/12.

The schedule

Sorry I haven't posted in 11 days, but there was really nothing to write about. However, we now know (sort of) what's going to happen with Karl this week.


Yesterday, Karl was taken to the Charlton Building downtown where he was basically shrink-wrapped to keep him immobile and then marked for the Mayo Clinic's version of the cyber knife. Apparently this is new technology they developed three years ago. Anyway, on Thursday he will have this procedure done, not only on the small tumor they found on his third lumbar, but on a minuscule spot the radiologist missed on his fifth lumbar. The oncologist caught it and said he didn't know what it was, but because they were doing this focused radiation anyway, they'd get it now. He went on to tell Karl that this radiation offers him a different treatment regimen because as long as they catch these tumors early, they can zap them before they get a chance to spread.


Anyway, they expect the procedure to last 30 minutes, although prepping him may take longer. They expect he will be a bit tired afterward and will return him to his hospital bed after the procedure for observation, but expect that Karl will suffer no ill effects.


Karl is doing very well in terms of strength, appetite and wound healing. In fact, the physical therapists said he wouldn't require rehab down on the third floor as previously determined. They may actually discharge him this weekend! Randy is on standby with Ken Thomas' van and if that's the case, he'll make the journey to Rochester to fetch him.


He has been test-driving mattresses and has determined the sand bed to be most comfortable and well suited for his condition. It moves for him and there is no pressure, which gives him total peace of mind and allows him to sleep and ergo, heal better. They've told him the air bed he's currently on is one in which he'd have to move frequently to avoid more bed sores, which really takes him back to square one as far as he's concerned. Obviously, we're hoping he gets the sand bed.


Karl and Mom had a surprise last weekend...Rodney and Terri Partridge popped in and spent the afternoon. I'll tell you, that Partridge Family...well the theme song lyrics say it all. "A whole lotta love is what we'll be bringin'. We'll make you happy!"


This is a good segue into a conversation Mom and I had with Karl recently. He mentioned that every Karl/Carl he could think of on TV and/or cinema is usually less than brilliant and wondered why Mom and Dad had named him that. Case in point: Carl, the gopher-hunting crazy man on Caddyshack. Then there's Karl Childers from Sling Blade, who was brilliantly played by Billy Bob Thornton. This movie is filled with great quotes and Karl (Hamilton) and I took the opportunity to find some soundbites and quotes and repeat them to Mom. Of course, Karl's favorite was, "You ought not done that to your boy, umm hmm." Mother was groaning, knowing she'd be hearing that frequently. Here's a classic Karl Childers' soundbite: http://www.moviesoundscentral.com/sounds/coffee.wav





Karl Childers from Slingblade


I'm not sure if there will be a Karl update after Thursday since I may be without the Internet until the 12th. I have given Karl specific instructions about how to update the blog, but it's going to be up to him.

Until my return, may you always walk in sunshine. May you never want for more. May Irish angels rest their wings right beside your door.

Beannacht a lan,

Kerry

Whewwww!

They came and got Karl for his PET scan this morning at about 7:30. We were waiting for him when he got back in his room around 11 a.m. He said the actual scan itself didn't take much time. He was tired and in pain from the movement, but his nurse Julie got him hooked up to his IV where he could hit the PCA button.

Shortly thereafter a physician's assistant on the medicine team came in and told him his liver enzyme numbers were declining. He was cautiuosly optimistic and wanted to see it continue to trend downward. If the numbers come in lower tomorrow, they will know they probably took away the correct antibiotic. Later on, Dr. Gomez came in, smiling and reiterating the same news. He said he thinks they figured it out.

Then we asked Julie if the PET scan results were back. She reported that they were, but she couldn't divulge the information. She put in a page to Dr. Brogan and asked that he come in and tell us the results. That was at 1 p.m. We were on pins and needles until Dr. Brogan showed up at 4:30. He delivered very good news.

The cancer has not metasticized. He said they expected that would be the case. He also said there were no remarks about the kidney mass on the reading by the radiologist and there was no uptake of dye. However, the concentration for this scan was on the spinal tumor. They are using the scan to map the radiation cyber knife. He said they use a lot of complicated mathematical calculations to program into the machine based on the measurements they take from the scan.

Dr. Brogan used a bag of popcorn on Karl's bed-side table to demonstrate. He pointed to a piece of popcorn in the middle of the bag and said they use multiple angles to beam radiation at the target kernal. Alone, the beams are weak so they don't destroy good popcorn. However, if they are all pointed at the same kernal, it will be destroyed. We were all nodding our heads like we understood. Then Karl said, "So you mean I won't be able to eat popcorn after this?" Dr. Brogan, put his head down, had a very wry smile, looked back up and said, "Perhaps I should have used broccoli as an example." And we all laughed.

Dr. Brogan's best guess was that Karl would have almost another week here on the 8th floor to continue his plastic surgery healing. Then Karl would receive the cyberknife radiation on Thursday or Friday of next week. He'd then be shipped down to the 3rd floor rehab unit the following week. He'd spend about a week there then be released. So, now we're shooting for a Labor Day release. Again, that's the best guess.

Regardless, we are thrilled and relieved about the news today. As Dr. Brogan said before he left the room today, "This sure turned out to be a longer stay than I figured, but I think it was good thing." We couldn't agree more, Dr. Brogan. We couldn't agree more.

Love and blessings,

Kerry

A Phew Photos

I don't really have a lot of new information to share, but Karl's PET scan is tomorrow and we're praying the tumor is very localized so they can map an easy cyberknife radiation course for him. He will probably have the scan sometime before noon, but we're not real sure.

Karl's liver enzymes are still elevated. Doctors are pretty sure they will plateau and then begin declining. They think his liver is having a reaction to Tylenol and/or one of his antibiotics, but it could take 3-5 days for it to decline. If it doesn't they'll take other antibiotics away until they come up with the culprit. I asked if we should worry and doctors said we shouldn't.

We've also been told they may move Karl down to the third floor rehabilitation area next week. He'll need some stretching and exercising before he's able to come home. I've heard release dates ranging from next Friday (doubtful) to the first part of September. I'm sure the PET scan will give us more answers, but I doubt they come before Monday. Regardless, the move down to the 3rd floor is a move in the right direction.

Now, rather than writing anything else, I thought you'd like to have a look around Karl's room and see the wonderful nurse he's had the past few days, Jenna. She is a sweetheart! Then again, the entire nursing staff is wonderful and treat us all so well.

Love and blessings,

Kerry







Karl's nurse several days this week, Jenna.

















































Mom and I went to the Mall of America yesterday for a few hours. It's huge!

Pure Seduction

Shortly after I hit "publish" on yesterday's post, Dr. Brogan came in to explain and discuss a few things. First, the PET scan scheduled for Friday will be used primarily to map where the cancer is on Karl's spine and determine the intensity and frequency of the radiation used during the cyberknife procedure. Until that's done, we really can't plan physical therapy or a trip home. Second, Dr. Brogan thinks Karl will need physical therapy and thinks maybe he can get in shape in a week down on 3MB. Third, Dr. Brogan is very happy with Karl's progress. He came in smiling and joking and left with the final words that Karl has been keeping him on his toes...he said Karl is a bunch of puzzles wrapped up in an enigma -- one of Karl's favorite expressions.

Today, Karl's labs came back a bit abnormal. His liver enzymes were about 4 times what his baseline numbers were a few days ago. The infectious disease doctors are analyzing his current drugs and will take him off some they think he can do without (Tylenol) and retest to see how his liver reacts. His white count is normal which means there is no infection. Plastics continue to be pleased with his healing.

Yesterday afternoon, Mom and I went to the Apache Mall to grab a bite for lunch and to do a little shopping. We ended up at Victoria's Secret where we got a bunch of fragrant lotions. Karl happens to love their lotions and knowing this, Mom brought back a tube of Pure Seduction. She rubbed it on his legs before we left for the evening. Apparently Karl rubbed it on his arms and then left the tube at his side and promptly fell asleep. During the night it slipped down into his bed farther and ended up near his legs. In the morning, his nurse Annie and aide Jill found it while they were fluffing him up. Well, you can only imagine the amount of ribbing he got. And it continued all day. His therapy team from two years ago came for a visit and noticed how wonderful his room smelled and then noticed the Pure Seduction lotion on his table. If you know Karl at all, you can just imagine the faces and comments he made. But I think I should leave it at that.

Something interesting happened today to me. I was walking around the St. Mary's campus and a man with two small dogs, Lily and Lulu, came up and started chatting. We talked about their ages and breeds and he volunteered that they were therapy dogs, except for Lulu who is on probation because she likes to eat her patient's food. Then he asked if I had a dog, blah blah blah, and pretty soon he asked why I was here. I told him the story and how wonderful everyone here has been and how at home we were. Then he asked me who our doctor was. When I told him it was Dr. Yaszemski, he said, "Mike is a very good friend of mine. Do you mind if I share what you've told me?" Of course I told him I'd be happy if he did. Then he said, "I'm on the Board of Governors. Do you mind if I share your story with the board?"

Wow. I Googled the Board of Governors at Mayo. This guy serves with Tom Brokaw and a bunch of pretty smart folks. I wish I had asked him his name. Then again, this is so typical of our whole experience here -- a bunch of brilliant folks run this place and they are so unassuming. We are so blessed!

May God bless you as well,

Kerry

Progression

Yesterday was a day of progression for Karl. And today he learned he'd be having a PET scan.

First for the progression: yesterday the plastics doctors were very happy with the way Karl is healing. They ordered that the wound on his bum no longer be packed; it can now be air dried. Also, the viscosity of his blood was at the point where he no longer needs heparin intravenously. He's now only on coumadin. In other words, it's at the point where no other blood clots should form. It was a good day!

Karl learned today that the PET scan doctors ordered is a go. It will be covered by insurance. They were all set to take him over by ambulance to the Charleton Building, which is in downtown Rochester, when nurses reminded the doctors that the plastics division should probably be contacted to see if it was okay for Karl to be on a hard stretcher. A few minutes later Karl's nurse Jenna reported that plastics said he could go on Friday, but not today. Thank goodness because he was getting hungry!

Today I went to the Gonda Building to return something Karl bought from the Mayo Clinic Store. Mom asked that I buy Karl a teeshirt so he would quit telling all the nurses how terrible we were for buying souvenirs and that he gets nothing and that if it weren't for him we wouldn't be on vacation, blah, blah, blah. Anyway, I actually bought him TWO teeshirts so we're hoping that will quiet him for awhile. I'm sure he'll figure something else he can complain about, but for the time being we're one up on him. Heheheh.

We're still at the point where we really don't know when Karl will have the cyberknife radiation or when he'll be allowed to come home. But as soon as I know anything, I'll be certain to let you know.

Love and blessings,

Kerry

Tornado/Ghillie suit

I'm still not convinced, but there are nurses here on the 8th floor that believe there's something to the Friday the 13th = bad luck superstition. There was a tornado warning here at St. Mary's and for the first time ever, they had to move Karl and the other patients out in the hallway for the duration of the storm. Then some of the rooms flooded so they had to shuffle patients around. They were sooo busy.

Prior to that, Karl called me while I was on the road somewhere in Wisconsin. He said there was a severe T-storm warning. When I asked what they were doing to keep him safe, he told me they closed the curtains and were giving him extra pillows. Well, the phone was a bit static-y and I thought he said they were giving him extra pills. We've been having a good time with that ever since.

I ran dead into the storm on my drive, but only after encountering an hour-long parking lot in Chicago and red tail lights all the way to the Dells. (I'm going to go a different route on the way home). Two years ago I wrote a post on this blog entitled something like, "Into the Storm." The message was about forging ahead and having faith. I mentioned that the sky was dark and ominous, but as soon as we got to Rochester, the skies lightened up and the sun peeked through, illuminating all the Mayo buildings.

Yesterday was the same, only this time I took photos.

Top: looking north at the Mississippi River, just after I crossed into Minnesota.

Middle: There was a tiny area where the sun was shining. The low ceilings and dark clouds looked pretty ominous. As I drove further, I saw veils of vertical clouds clinging to the hills. I couldn't take photos because it was raining too hard.

Bottom: Just south of Rochester, the sun peeked out of the clouds. It was still pouring rain, but it was encouraging to see the sun..

Karl is feeling well and his skin grafts are healing nicely. He is receiving heparin and will bridge over to coumadin to thin his blood and dissolve the non-threatening blood clots.

I brought with me a gun/accessories catalog. He was eager to look at it; he really wants a Ghillie suit. He says he'll hide in his bed and scare the nurses. I love Karl's sense of humor.

Ghillie suit

Hope you have a wonderful weekend.

Blessings,

Kerry

Hanging out and healing

Hello folks,

Karl's just hanging out and healing. Yesterday there wasn't much activity. He went down for a hydrotherapy treatment on his foot and then rested for the rest of the day. I know he'd be happy to hear from you. His email address is kaz-ham@hotmail.com. I don't know how often he checks his email, but he has his computer so feel free to drop him a line.

I am driving to Minnesota today to see Karl and Mom. Don't know how long I'll be there. Karl suspects he'll be discharged after his cyberknife treatments for the sarcoma on his spine. We're not sure when that will be, but we think he will have another week of healing before they do that.

Anyway, keep the prayers coming!

Love and blessings,

Kerry

Ch-ch-ch-changes

One thing that's been very consistent with Karl's stay at St. Mary's is change. I'm so thankful that Karl is able to "go with the flow." The announcement of these changes never gives him any heartburn. The only issue I have is that if you don't keep up with the blog on a regular basis, you may have outdated information. And sometimes only minutes after I've put up another post, the information is obsolete. But I'm fine with it because I know all of these changes are made with Karl's best interest in mind; it's the kind of care he needs. I'm grateful the people there are not so rigid that they cannot change their minds as the situation necessitates.

The newest change is that Karl's plastic docs have said they don't want any extra pressure put on the skin graft on his bum. The cryoabrasion procedure would require him to lay on the graft for two hours straight and that would compromise the work they did. So, they've decided to have him come back in a couple months when the flap is well-healed (which, by the way, is pink and healing well). The nephrologist came in to tell Karl it wouldn't be a problem -- the cancer (if that's what it is) won't grow in that time period. Karl said it would be a nice birthday present to himself...another vacation in Rochester and another scar!

The CT-scan Karl had yesterday came back negative. YAY!! They did find another blood clot they think may have developed the same time as the other clot. The screen they put it two years ago will catch it and they told him it was nothing to worry about. Now they want to do a PET scan just to make doubly sure there's no other cancer lurking about. We'll see if the doctors can convince his insurance company to pay for some of it.

I asked Karl if he was sleeping well. I know he takes a lot of cat-naps during the day because he gets pestered so much. So I thought I'd lay out Karl's typical night/day. At midnight the nurse comes in and changes his dressings. At 1 a.m. he gets more pain meds. The nurse comes in from time to time from 1:30 to 5 a.m. to chart his vitals and give him more pain meds. They try not to wake him, but Karl's a light sleeper so when the nurse is counting his respirations, he normally wakes up and startles the nurse by opening his eyes widely, which brings him great delight. Last night Rebecca asked him why he wasn't sleeping and he told her with a sarcastic grin, "If you'd quit coming in here and staring at me I might get some sleep." Anyway, at 5 a.m. they come in for a blood draw; at 6 a.m. they change his dressings again and at 7 a.m. the doctors start rounding. For most of the daylight hours there are people in and out -- therapists, doctors, nurses, etc.

He's getting so much attention! Thanks be to God!

Blessings,

Kerry

So far, so good

Sorry for the hiatus...brother Kirk was in town and we had a nice time catching up.

Karl is doing well in terms of the plastic surgery to repair his bum and heel. Doctors were especially concerned about his heel because the blood supply is not as good there. But, so far, so good. They've been applying an ultrasonic mist on the other heel and it continues to respond well.

In the meantime doctors have been trying to figure out how to best take care of the spot on his kidney. With his kidneys' limited function, they want to limit the invasiveness and blood loss. Karl has agreed to go with cryoabrasion. They will do that procedure sometime this week or next. The cryoabrasion consists of punching a hole in the spot and freezing it. They will take a small biopsy to determine just exactly what it is. His body will then eventually absorb the part that's frozen. Karl will be under general anesthesia. They feel this procedure will be less stressful on his system and still get the job done. There are advantages to doing the cryo now: 1). With any loss of bad tissue, there is loss of good tissue and they want to limit that loss while the mass is still small. 2) They will keep close tabs on him and if the mass grows at all, they can always go in and get it later. We're thankful it's a slow-growing mass.

Today Karl is going in for another CT-scan -- this time it will be of his entire body. Doctors don't think they'll find anything else, but they want to make sure. And since the car's in the shop, they figure they can take care of it.

Doctors have told him they will probably do the radiation cyberknife on Karl's spinal tumor in 2-3 weeks. It has the same advantages as the cryo, but is apparently works better. Anyway, we're looking at Karl coming home in 3-4 weeks. We're hoping and praying!

Since you all probably look forward to Karl's crazy antics, I will not disappoint you. Karl is hooked up to a heart monitor. Nurses have it set to alarm whenever it goes above 120 beats per minute. For some crazy reason whenever he eats, his heart races in anticipation of the food going in his mouth. It's really odd. One day Karl decided he would get a fork full of food and move it close to his mouth and then back it away. The alarms sounded and the nurse came running in. She asked what he was doing and he said he was "teasing himself."

We are all so thankful for your thoughts and prayers. We can certainly testify to how well they work.

Love and blessings,

Kerry

You aren't going to believe this

The good news is it's 98 percent curable.

The bad news is that Karl was told about two hours ago that he has an 85 percent chance of having kidney cancer. I know. Unbelievable.

He has apparently had a small spot on his kidney for two years. They've been keeping check of it since they first saw it in 2008. The Mayo nephrologist told Karl that if it stays smaller than 3 cm, they normally don't do anything. However, since it's grown quickly to 2 cm since the last time they checked it, they feel it's necessary to get rid of it. If it is indeed cancer, it is not a sarcoma. It's a completely different kind. They will talk with Karl tomorrow about what they'd like to do to erradicate the tumor. Have I mentioned lately how thankful we are that Karl's at Mayo?

Dr. Yaszemski came in tonight to talk with Karl. He told Karl everything went very smoothly with the surgery. They cut off part of a rod and shifted a muscle from his right rump to fill the void left by the decube. They also moved tissue around on his heel and he's in a soft cast. Dr. Y also alerted Karl to the kidney problem. He told him they found a spot on his kidney, but it was nothing to worry about. He also told him someone would come in to talk about it.

Now you might be saying to yourself, "What are the odds that one person can have 3 different kinds of cancer?" I don't know the answer to that. All that I can figure is that if cancer was the lottery, Karl would be very wealthy. Then I wonder why it couldn't be the lottery. How much can one guy take?

Karl called himself -- with a laugh -- "Cancer Boy" after he explained the situation to me. Then we talked and laughed about Karl's Kwips on the right-hand side of this blog and the whole "conceived in a nuclear waste dump" comment. Karl now thinks maybe it was ground zero in Hiroshima. Anyway, all I can say is, "Hey Cancer Boy, I'm thinking about getting you a cape and some tights because you are my superhero."

Blessings,

Kerry

Surgery news

11:45 a.m. EDT: Just heard from Mom and Kirk out in Minnesota. Karl didn't get an early start as slated. In fact, Dr. Brogan came up and told him the party was going to get started without him! Anyway, he went down around 8:30 a.m. CDT and surgery began at 9:30. They expected it to last a couple hours and then another recovery period before they ship him back up to his Clinitron bed on the 8th floor. I'll add to this post whenever I hear anything.

Noon EDT: Wow, just heard from Kirk. The service called to tell him doctors were closing up and Karl will be in recovery for the next two hours or so. Since the surgery took less than two hours, we can only assume everything went well. I'm sure we'll know more soon.

2:45 EDT: I am on the phone with Karl right now! He's in his room and has been there for about 45 minutes. He's a bit hoarse and says his foot is really smarting where they patched him up. He was told everything went well. He has a large bandage and drainage tube on his tookus, but thankfully, he can't feel anything. He'll be in his Clinitron bed for the next three weeks where they will monitor him carefully. He's begging his nurse Tracy for more pain relief, but she said he's not getting anything. Then he said, "You mean I can't even get an aspirin?" Oh his sense of humor!! Thankfully, some things never change. I'll report in if I hear any more later this evening.

Thanks for all your emails and facebook messages. We're feeling the prayers and love!

Blessings,
Kerry

Surgery details

The past few days have been busy with decision-making. Honest to goodness, there were more ideas tossed around than I could have ever imagined. We are all so grateful that so many ideas are being considered. Anyway, this what I know:

Surgery will take place tomorrow, Aug. 5 at 6 a.m. CDT. They've collectively decided they would like to keep the metal holding his spine together intact. The hydrotherapy (lavage) has been doing a good job with cleaning the decube and generating new growth. Doctors feel they can take a piece of Karl's buttock and skin and fill in the rest of the hole. They also feel they can kill any bacterial growth that may take place on the metal with antibiotics. They'll assess the situation over the next few weeks, and if necessary, they'll take out the metal. Obviously they don't feel that will be the case, otherwise they'd remove it tomorrow, but they want the surgery to be as minimal and least invasive as possible. Karl said they were also going to patch up his right heel, but lavage has also made marked improvements on his heels. The surgery shouldn't last long, but they couldn't give us a time-frame.

In terms of the cancer, Dr. Yaszemski feels it can be killed using radiation. They've talked about cryoabrasion, cyberknife and a regular surgical resection. The radiation is apparently the least invasive and Dr. Y feels that it will be easier for Karl to tolerate than the other options. They will do that in about 3 weeks after his skin flaps have healed better.

I just talked to Karl moments ago to see how he was doing. He said he's very confident and relieved that it's finally going to get repaired. He said Dr. Y was also very confident. He told Karl he's first on the docket and he'd take good care of him.

We are so thankful that God lead us back to Mayo. We hope you'll say an extra prayer for Karl and the doctors and I promise to post something as soon as I get any information.

Love and blessings,

Kerry

Back in the saddle

Last week certainly brought news we were all hoping never to hear, but it's time to move on, forge ahead and see what God has in store for us. While Randy and I were recharging our batteries in Kewadin, MI (at the A-Ga-Ming Resort overlooking beautiful Torch Lake), there were a few bits of news.

Karl's heart rate still continued to be elevated, so after talking it over with the endocrine team, Teresa, his PA-C, ordered some doppler studies to rule out a blood clot. Well...they found one. It was located in his groin area and had partially broke off and went into his lung. Karl said they were not concerned and they put him on coumadin to thin his blood. I asked Karl when they were going to find something good...like a golden egg stuck somewhere. Randy replied that if they did find a golden egg, they'd never tell anyone.

Dr. Yaszemski was finally in town again and talked to Karl on Friday. He told Karl that after extensive consultation with many other physicians, he thought it would be best to surgically remove the tumor. At the same time, they would also remove all of Karl's rods and screws and put a tissue flap on both his rear end and heel. He said the surgery would last hours rather than days it took in 2008. He said the earliest the surgery could take place is Thursday, Aug. 5, but needed to assemble the appropriate team with the plastic surgeons being the most important. Another caveat is that Dr. Y is also on call as the trauma surgeon that day and he told Karl he wanted him to be his entire focus that day.

Dr. Y did deliver good news: he didn't feel Karl would lose total function of his legs afterall. He said he'd probably be weaker in the knees, but with therapy he'd be able to build up his strength and use them as he does now. Dr. Y did say Karl would spend a good amount of time at Mayo, but not as long as last time. He also said that if the structure failed, he'd reinstall the rods and screws, but by taking them out, there wouldn't be the chance for reinfection. By the way, his hydrotherapeutic lavage sessions are going very well. They are keeping the infection at bay and his decubes are improving. Karl will also probably get a dose of radiation in his back. They are concerned he couldn't handle another round of chemotherapy and since this area hasn't been exposed to radiation in the past, they are comfortable with that as an option.

Karl is comfortable and confident. We are all very happy that they will keep Karl at St. Mary's/Mayo for a period of time. We know he's getting phenomenal care. Right now brother Kirk is there with Mom, who twisted her knee again. She was promptly given a cane by the wonderful girls in rehab and Karl reported today that she seems to be walking better already.

We feel your prayers and are most thankful for them. Keep them coming!

Blessings,

Kerry

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

Pump...him up

I am happy to announce that Karl is home and doing well. He got home Sunday afternoon.

He is on a very aggressive course of prednisone. Doctors are theorizing that it will kick-start the rest of his endocrine system. They've adjusted his thyroid medication and are thinking the prednisone will get his pituitary gland to interact better with his adrenal glands to produce more cortisol which will, in turn, cause his blood pressure to stabilize. Doctor believe the drop in blood pressure is what's causing his kidneys to function irregularly. In other words, they don't believe it's a chronic problem, which is very good news. Of course we don't know how much damage has been done to his kidneys but we certainly hope and pray that it's minimal.

Of course Karl asked the doctors if the particular steroid he's on is the same one Arnold Schwarzenegger used to take. I think he figured he'd bulk up like Arnold. Really, who wants to be a "girlie man?" Anyway, the doctors said it was not the same steroid. Karl then said, "Well, can you hook me up?"

One of the things Karl has to be concerned about right now is that his immune system will not be at its best. Apparently steroids do amazingly good things for the body, but a downside is that it weakens the immune system. For the next month Karl will have to be very careful about being exposed to viruses and bacteria.

For right now things are status quo for Karl. But I'm sure he can use your continued support and prayers. If his condition changes, good or bad, I'll let you know via a blog post.

Again, thanks for your concern and prayers.

Blessings,

Kerry

Pitooooey!

There was a slight change in plans concerning Karl's tests on Friday. He was supposed to have a kidney biopsy. However, Karl's morning lab results indicated he was anemic so they postponed it. Then the tests came back from the endocrine study he underwent on Thursday. It appears that Karl's pituitary gland is sending the wrong signals to his adrenal glands and he's not producing enough cortisol. It's amazing that a gland the size of a pea can cause so much trouble! Anyway, doctors are theorizing that the lack of cortisol is causing Karl's blood pressure to drop which, in turn, is affecting the function of his kidneys.

He underwent an MRI this morning so doctors could get a better look at what was happening with his pituitary gland. They found a tiny 4 mm growth. They aren't sure what it is, but they aren't worried about it. They've decided to give him prednisone with the thought that it will kickstart his whole endocrine system and prevent his kidneys from scarring. Doctors have also decided that Karl won't need a kidney biopsy for now. His creatinine levels have already come down and his blood pressure is much better.

They've also taken him off IV fluids. They want to see how his blood pressure does without them. They also want to keep him a couple more days...just so they can monitor his reaction to the steroids, etc. I guess the bottom line is that they don't want to discharge him and then have him turn around and come back in a day or two. When he leaves this time, they want him to be better!

We're grateful the medical personnel here are delving deeper into the probable causes. They have told Karl they suspect it's an acute problem rather than chronic, and that's good news, indeed!

Thank you for all the prayers!

Blessings,

Kerry

A puzzle wrapped in an enigma

Karl certainly has NOT lost his sense of humor! I walked into the emergency room at University Hospital on Tuesday and found this:

The stickers were certainly alarming and I wondered what on earth they could be scanning in his head that had to do with his kidneys. Of course he said they had given him a brain scan and didn't find anything. Turns out they had given him and EKG and a wastebasket wasn't nearby so he stuck these on his head just for fun. Everyone that walked past his room and looked in did a double-take. Then they smiled and went about their business.

I am so thankful for Karl's sense of humor. He was admitted to the ICU on Wednesday about midnight. (It was a long day/night in the ER while he waited for doctors to make up their minds about whether he should go in the ICU or a regular room). Upon arrival after seeing the stickers on his head, one of the nurses declared, "So we have a comedian on our hands." On Wednesday afternoon they transferred him to a regular room (5B-5425 for those who are thinking of a visit). Several teams of doctors came by with theories about what's happening to him. The conclusion is that Karl is definitely having an allergic reaction to the antibiotics. He also has an external yeast infection caused by the antibiotics which is being treated topically (blood cultures were negative for an internal infection). The problem is that an allergic reaction to antibiotics does not explain a drop in blood pressure. As he told the doctors with a wry smile, "I'm a puzzle wrapped in an enigma."

A team of endocrinologists came in on Wednesday and said they wanted to run more tests on his adrenal and pituitary glands. They've already determined his thyroid needs more attention so they upped that medication. On Thursday his internal medicine team came in and declared that Karl would probably be released soon. About an hour later his renal team came to ask if they could do a kidney biopsy, which means he'll be there another day, at least.

Of course the risks for Karl are a little different than for you and me. Karl is not your typical patient. Then again, he's not your typical human! He inspires me. After explaining everything that could possibly go wrong -- from bleeding, to infection, to the loss of a kidney -- Karl said, "put me on the schedule. I want to get to the bottom of this." The nephrologists hope they can pinpoint the cause of the problems and minimize damage to the kidneys.

We are thankful they are looking at all angles and we hope they can figure out Karl (the team of psychiatrists have yet to be seen)! In the meantime, I'm praying the biopsy goes well today, that there are no complications and that they find it's an acute, rather than chronic, issue that can be treated easily and again, with no complications.

Blessings,

Kerry

D-Day

Today was D-Day for Karl...Doctor Day. He had two appointments -- one at 11:30 a.m. and one at 2:30 p.m. Unfortunately, Karl's creatinine level was very high (7) and his blood pressure was very low. So, as I write this, Karl and Mom are in the emergency room at U-M waiting for lab results so he can be admitted. Yes...again. We should have known; Karl has been sleeping a lot lately.

His new primary care physician, Dr. Mott, conferred with infectious disease control and they think Karl's having another adverse reaction to the antibiotic he's currently taking. Dr. Mott wants Karl to be in the hospital so they can figure this out once and for all. Seems like we've heard that before. (Pardon the frustration).

Anyway, I thought I'd let those of you who check on the blog know so that you can say an extra prayer for Karl. He sure needs 'em and we know they work!

Blessings,

Kerry

Gefülltes Schweinefilet

Thought I'd give you a brief update as to Karl's progress: he's hanging in there. The strong antibiotics he's infusing are causing the typical problems, which is causing some of his counts to be out of whack (a technical medical phrase, I believe). In order for his potassium and creatinine to be at normal levels, Karl has to drink an enormous amount of water. But, by golly, he's doing it. Three liters is the minimum, he's been told.

Karl is feeling much better, although he's still not a hundred percent. I imagine it will take time to get back to normal. It took him a few days to get rid of the extra fluid he was carrying due to the IVs he received at the hospital. The swelling finally went down enough for him to get out of bed for a bit the past few days.

Karl's gotten his appetite back and has been craving, of all things, carne asada. He talked about it for two days and looked up multiple recipes on the Internet. Mom finally got around to making it Thursday night and that seemed to satisfy his craving. I'm just hoping he doesn't crave something we can't make! The menu's a little more plain tomorrow...I'm taking him meatloaf for lunch and stuffed porkchops for dinner while Mom heads to Cleveland with a friend. I'm going to tell him the meatloaf is a wonderful French dish: Boeuf avec soupe à l'oignon et le ketchup and the pork is German: Gefülltes Schweinefilet. That'll throw him off (hopefully).

Thanks for your continued prayers.

Blessings,

Kerry

Home

Karl is home! He will give himself infusions of antibiotics every eight hours for the next two weeks, but that sure beats being in the hospital. He is still very puffy from all of the fluid they gave him. In fact, he's not sure he can transfer himself into his wheelchair because his joints are so stiff. However, he is confident that will remedy itself soon -- within a day or two -- and he'll be able to get back to some sense of normalcy.

I haven't talked to any doctors so I'm not sure what the consensus on Karl's diagnosis is, but based on piecing together what he's told me, it sounds as if there were a few issues that when put together, were a nasty mix. We know he definitely had pneumonia that went septic. Whether it started here in Michigan or Maui is unknown and moot. His kidneys were affected by the sepsis and began to shut down. In Maui they gave Karl antibiotics and steroids. U-M docs think the folks in Maui didn't keep him on the antibiotics long enough and had him on the steroids too long which means the pnemonia didn't go away completely and his kidneys could never get back in the fully-functioning mode. Of course there was the whole allergic reaction in Maui for which U-M doctors could offer no explanation. Regardless, Karl is now home and doing much much better. All of his levels are near or at normal.

His mood is getting better each day, but you can imagine how depressing this must be for Karl. At this point he says he'll never go on another vacation and instead of a tropical paradise, he thinks Maui is, well, quite the opposite. I'm sure as time goes by the bad memories will fade and he'll change his mind. Plus, we'll be working on him.

We know without a doubt that your prayers were instrumental in helping Karl get better. We are so thankful for your love and concern.

Blessings,

Kerry

Virtual wedding guest

It's been a busy last few days, but thankfully, things have settled down a bit for Karl. Today he was moved from ICU into a regular room at University Hospital. If anyone's interested in visiting, he's in unit 6B, room 435. Doctors still have not specifically pinpointed the cause of his infection. First they said it was a screw. Then they said it was another infection in the kidneys. Then they said it was his lungs. Now they're saying it may be an issue with steroids given to him in Maui. Regardless, they say they'll get to the bottom of it.

In the meantime, Karl was able to see his niece's wedding and part of the reception via a live-feed on his computer on Saturday. We told him we weren't going to have the volume on during the wedding in case they had to provide some sort of care for him at the hospital. Of course he protested (jokingly) because he said he planned to starting yelling when the pastor asked if there was anyone who had any reason that the couple shouldn't get married.

We also took the computer to the reception where people were able to send him instant messages. Unfortunately Karl was undergoing some pretty nasty procedures at that point. They believed his arms were giving inaccurate blood pressure readings and so they began sticking needles deep into the arteries in his arms. They poked him at least 20 times. Fortunately, they were right...his blood pressure was much better than what the cuff was telling. In the meantime, in order to raise what they thought was low blood pressure, they gave him a large amount of fluid intravenously. He puffed up like marshmallow and was pretty uncomfortable.

Tonight he was still a little puffy, but feeling better. His creatinine count is still high and staying steady at 4.9, but they feel it will drop. They believe once the steroids leave his system, his own adrenal glands will start making the proper amount and then his kidneys will get back to normal. All of his cultures came back negative which is leading the doctors in this direction.

While he feels he got very good care in Maui, he is very confident in his care at U-M. Dr. Schuetze stops in almost daily and seeing his familiar face gives Karl a huge boost of confidence. They have told him they hope to be sending him home sometime this week, but Karl doesn't want to come home unless he's "fixed." I'm sure he'd like to avoid unnecessary pokes and repeated questions.

I can't begin to tell you all how much we appreciate your prayers, thoughts and kind words. They mean so very much to all of us. And while last week was pretty stressful for all of us, I'm pretty sure this one will be much calmer...mostly because Karl's feeling better and there's not a wedding in the works!!

For those of you wondering, here's a photo of the bride and groom.

Nikki & Darrell Eaton

Broken Record

I don't want to sound like a broken record, but...Karl needs your prayers still/again. We had to take him to the University Hospital Emergency Room tonight. Mom reported that he slept most of the time on the plane and had a tough time keeping his eyes open even when he tried staying awake. It was a red flag. He then went straight off to bed and slept for five hours when he got home. After talking with Mom, I thought I should pay a visit. He seemed extremely tired, very dehydrated and his kidneys weren't doing their thing again. When we got to the ER, his blood pressure was very low (64/34) and his heart rate was high. Within 15 minutes of being seen by the resident, Karl was told he'd be admitted. You can imagine the disappointment.

The resident said these symptoms usually indicate an infection. After just a liter and a half of fluid, Karl's blood pressure was thankfully climbing. The nurse, after hearing that Mom and Karl had just returned from Maui, encouraged Mom to go home and rest. Mom didn't argue. She was completely exhausted. We headed home aroud 8:15 p.m.

Since then, my friend Marcy, who works at the U, said she checked on Karl. His blood pressure is better, but his creatinine is 5.9 (which means he's apparently producing urine again). He will be admitted to CCMU on 6D after they put in a central line.

Prior to that, Nikki, the bride-to-be, checked in on her Uncle while she was in Ann Arbor. They both had tears knowing that he probably won't be making it to the wedding on Saturday. But as she told him, "Unk, I'm glad you're back in Michigan. That's the best wedding present of all...having you here."

To that I say Amen.

Blessings,
Kerry

Finally home

Mom and Karl are home. Finally. They ended up switching airlines in Maui, which worked out in their favor...they got home sooner.

Both are very tired, especially Karl who made a beeline for his bed. But they are both very happy to be home.

Thank you all so much for your prayers and concern.

Blessings,

Kerry

My grandma was a Murphy

When the phone rang at 7:30 this morning, there was no way I thought it would be my mom. In fact, when I woke up around 6:30 I said a prayer that they were having a comfortable flight, that Karl got a seat in first class, and that they'd make their connections without issue.

You've heard of Murphy's Law, right? The law that if anything can go wrong, it will. Well, guess what? Mom and Karl are STILL in Maui. The plane that was supposed to bring them home had engine problems. So after hanging out at the airport for an extra three hours, Delta finally decided they were going to postpone the flight until 2 p.m. Hawaii time today. That means they should get here sometime before noon on Thursday.

After the initial shock, I started laughing. Then Mom started laughing. Really, what else can you do at this point? She said Karl now absolutely HATES Maui, to which we both laughed even more. At the airport Mom had to make a strong case for going back to the hotel from which they came. It's a five-minute shuttle drive and has handicapped-accessible rooms. Others on the flight had to go to Makena which is about an hour away. Of course Mom was cracking up at the thought of what her new friends -- the hotel employees -- would say when she went down for her coffee later this morning.

There is an unwritten rule on Hawaii -- you are not to take home anything that's natural unless it's sold or given to you. In other words, you shouldn't bottle up sand, collect shells, etc. because the Hawaiian god Pele will bestow upon you his wrath. I had to ask Mom if on one of her journeys she took home some black sand or something she shouldn't. She said not unless it was stuck between her toes.

Of course there's another way of looking at this whole thing: I think God is watching out for them. While Karl may not see it this way, I think God has intervened on several occasions during his trip. I know one thing: I sure don't want Mom and Karl on a plane with an engine in disrepair.

As we ended our conversation, Mom said Karl was sleeping well on the bed and she had made a makeshift bed on the couch and was going to grab some shuteye. She'd call later with details. Barring any other unforeseen circumstances, I'll let you know when they are safely home.

Blessings,
Kerry

Green light

Doctors today gave Karl the green light for discharge Monday. They took out his IVs on Saturday. While his creatinine is still 3.1, his potassium and magnesium are a little off and he's still a bit anemic, his nephrologist said this is all due to his kidneys trying to right themselves. He said he was sure they will be back to normal soon. His internist also said she was happy with Karl's test results. So, barring any crazy flare-ups, Mom and Karl may be on a plane back to Michigan tomorrow -- Tuesday at the latest.

Thankfully Karl has some frequent flyer miles and is going to try to upgrade to first class so he can be more comfortable for the flights. The first leg will be an eight-hour flight to Atlanta with a three-hour layover and then a two-hour flight to Detroit. They should touch down some time around 4:40 p.m. Tuesday or Wednesday, depending upon when they depart.

I know Karl can't wait to get out of there and we can't wait to have him home. Thank you all for your continued prayers. I'll let you know when he's finally back home.

Blessings,

Kerry

Impatient inpatient

I haven't had access to a computer for the past couple days, but wanted to give you an update on Karl. He was moved to a regular room on Thursday. His creatinine count is 3.3 and dropping and he's a bit anemic. Both of these issues are functions of his kidneys. Doctors believe a bit of Procrit may help his system and at the very least will help increase his hemoglobin numbers.

Karl's voice is much stronger and he really Really REALLY wants to get out of the hospital. But we've been reminding him that we want him to be strong enough to be able to handle a 14-hour day of flying and airports. The inpatient is very impatient.

Mom intends to leave Maui on Tuesday with a Detroit arrival on Wednesday afternoon. (My daughter Nikki is getting married May 1 and she wants to be home for that). We're praying Karl can make the same flight. We've been discussing all kinds of options, but until we know if/when Karl will be discharged, concrete plans can't be made.

Please pray that Karl's health (specifically his kidneys) continue to improve and that his patience not wear too thin.

Blessings,

Kerry

Great news!

This short and sweet post is to let you know that it looks like the doctors guessed right -- Karl was having a reaction to the antibiotic. His vitals are back to normal. His blood pressure is 126/71, pulse is 86 and temp is 98.6! He asked Mom to bring him two sausage McMuffins, two hashbrowns and two milks this morning for breakfast. His rash is gone as well. Mom didn't know if his creatinine numbers had dropped, but we're suspecting they have and doctors have told Mom they will. Mom is now hopeful they'll both be able to come home next week.

Thank you all so much for your prayers. It seems that Karl's turned the corner, but now we need him to make it the rest of the way home.

Blessings,

Kerry

Changing directions

Karl has been off his antibiotics for almost 24 hours. Doctors hoped this would cause his fever to spike in order to take more cultures. Oddly enough, his fever is going down! So now they think he may have been having a reaction to the antibiotics. He is miserable with a rash caused by the drugs and didn't sleep well last night. Mom is hoping he can rest today as the antibiotics continue to leave his body and his rash goes away.

His creatinine level is still 4.0 and his blood pressure is a bit on low side, but they're thinking once the antibiotics leave his body, those measures will level off and he'll feel better. We're praying this is the change in direction he needs to start recovering enough to get home.

Continued blessings,

Kerry

Culture shock

I spoke with Karl first thing this morning (7:30 a.m. Hawaii time). He sounded exhausted. He told me his back was very sore where they drained the fluid from his lungs. They've been giving him pain medication and a sleeping aid because they want him to rest.

Mom called later with news from one of the physicians on Karl's case. All the cultures -- and there are many -- came back negative. They cannot pinpoint what's causing the infection and his white cell count is normal. Therefore, they are taking him off all the antibiotics he's currently on and will wait for his fever to spike again. Then they'll take more cultures and proceed from there. They think the antibiotics are not killing the infection, but are doing a good enough job to mask the source. Right now Karl is developing a rash from one of the antibiotics so he's itchy and miserable. At least he'll get a little relief from that. They promised they'd get to the bottom of it, but they said it would take a day before the antibiotics were flushed out of his system so that his fever could spike.

Karl is pretty depressed and the thought of having to spend more time on a bed of ice isn't exactly a pleasant thought. Of course he makes fun of the situation and tells everyone they'd put him on ice if his temperature was 98.7. His blood pressure is running steady, but there was a faux pas in my last post about his kidney creatinine level -- it continues to remain higher than normal at 4.0.

Thank you for checking up on Karl. We all appreciate your prayers and kind thoughts.

Kerry

Just chillin' -- literally

I'm sorry I haven't given an update lately; I've been out of town. But Karl has sure been through the ringer and can really use a prayer booster shot.

On Friday Karl's creatinine levels stayed around 4 and his blood pressure was still 75/40. His kidneys were working okay and Karl was comfortable and cutting up on the phone with me and with medical personnel. They did a CT scan on his body but could not pinpoint a specific source of infection. There was fluid build-up around his lungs, but doctors thought maybe that it was due more from all the fluid they had been giving him intraveneously rather than the pneumonia. They ruled out that the infection was due to the port in his chest. Karl slept most of the day.

On Saturday Karl began running a fever. It spiked to 103.8 which is when they decided to put him on a bed of ice to bring down his fever. 'Doctors said the infection had gone septic again. To try to remedy that, they gave him a watered-down version of the vancomycin that caused him to have Red Man's Syndrome in Mayo Clinic. Remember that? They also infused it slower, thinking that would allow his body to accept it without any issues. Mom reported that within 5 minutes of infusion, his skin started getting blotchy and he began itching. Needless to say, they dicontinued the vanco immediately and told him, if asked, to say that he's very allergic to it. Karl was kept on ice most of the night because his fever was still elevated. Mom said she said a prayer over him and he woke up long enough to grab her hand as she was doing so. I talked to him about 1 a.m. EDT; he seemed in good spirits although very tired.

Today Karl is VERY tired. His fever is lower and he's now being cooled by fans, cold compresses and only a sheet to cover his body. Mom said he didn't want to be bothered. The tell-tale sign is that he keeps a sheet over his head. We figure he got little or no sleep during the night and the staff wants him to sleep as much as possible. The good news is that his creatinine levels are almost normal and his blood pressure is more acceptable, albeit a bit low still. They think perhaps maybe they're past the point of Karl being septic. They tapped his lungs and drained a quart of fluid from it. They will run a culture on it. Only sputum in previous cultures has showed signs of infection and as Karl said, they checked every orifice. They tried a different antibiotic on him and we're hopeful this one will do the trick. They told Mom that draining his lungs will allow him to cough and exercise his lungs. There has not been any discussion about dialysis since his first admission to Maui Memorial on April 3.

Mom is hanging in there. I asked her if she wanted me to fly out and help. She said absolutely not. She's been receiving hugs and words of encouragement from the staff and both the hospital and the hotel. She was told by the social worker that she shouldn't worry about flight arrangement, which put her at ease. She IS worried that Karl will be very weak when he's released. But I imagine the social worker will make arrangements when the time comes to address that situation. There is no talk of a release date -- that's way too soon. I'm just praying Mom and Karl will be home for their granddaughter/niece's wedding on May 1. But most of all, I'm praying they figure out what combination of drugs works to knock out the infection so that Karl begins feeling better. That would be a wonderful wedding gift.

We are feeling your prayers and concern and thank you for them.

Hugs and blessings,

Kerry

10 p.m. EDT: Just talked to Mom. Karl's fever is down and he's feeling better. I could hear him in the background chit-chatting with the nurse. Mom said everyone there loves him. No surprise!

Maui Wowie

You aren't going to believe this -- Karl and Mom are spending at least another night in Maui. He's back in the emergency room at the hospital and they're going to keep him overnight. His kidneys are acting up and his blood pressure is low again. Medical personnel, Karl and Mom all agreed that his kidney function is too important to risk a 14-hour day in planes/airports. He's pretty bummed. But in typical Karl fashion he said, "I guess Maui doesn't want me to leave." He's feeling okay, although very tired.

The past two days he's spent lounging around in his hotel room. Yesterday and today he ate well and drank plenty of water. As today progressed, his kidneys were not processing the water, which alarmed him. I'm so glad he sought help. He called cousin Trese, RN, who advised him to visit the ER. We were hoping a little lasix would take care of the situation. Unfortunately his creatinine level is back up to 4 which is a signal his kidneys are working too hard. Karl didn't have any more information as far as what they're going to do to help him.

Anyway prayer warriors, we need your help...still. Thank you for everything. I'll keep you posted.

Kerry

Addendum 1: I heard from Mom about 8 a.m., 2 a.m. Maui time. He's back in ICU and is hooked up to myriad IV bags. He has some sort of infection. They're not sure what it is, but they're trying to get to the bottom of it. His kidneys are now doing what they're supposed to be doing. His blood pressure was dangerously low again. One of the nurses told him it was a good thing he didn't get on the plane. With his blood pressure as low as it was, Karl was told he probably would have quit breathing on the plane. Yikes! Anyway, it seems that both Karl and Mom have gone from upset about not being able to come home, to thankful they stayed. I'm thankful they can roll with the punches. And when you think about it, Karl's been through a lot worse.

Addendum 2: Just talked to Mom. It's 11:15 a.m. there. Karl's kidneys seem to be working well right now. They are not sure of the source of the infection, but Mom said they will definitely get to the bottom of it this time. They don't think it's pneumonia. Rex, the RN, said it could even be his port. She said Karl has tubes running everywhere, but he's very comfortable and resting well. Mom said she wouldn't be surprised if they kept him another week. Oy.

Mom got about two hours of shut-eye last night. She's still very optimistic and said she'd make up for it tonight when she leaves the hospital early. As I write this she's checking out of one room and into another at the hotel. They have been absolutely wonderful there. The shuttle driver who took them to the hospital last night, Scotty, asked her what was going on when he saw her. When she told him, he said, "Come here; you need a hug." Then he told her if he had room, he'd let her stay with him. Scotty has also offered to make special runs for both Karl and Mom. Of course Karl has already asked for McDonald's. Rex (the nurse) actually dropped her off at the hotel after his shift ended early this morning.

Some of you have asked how Mom is doing. She said her attitude is this: Karl's the one who has to go through it. If he can do it, it's no big deal for her. What a superwoman she is.

Love and blessings to all.

Karl got sprung!

I'm happy to announce Karl is out of the hospital and is happily settling in to his hotel room near Kahului. Karl's creatinine levels are near normal. His white blood cell count was a tad bit high, but the doctor released him under the condition that Karl see a doctor immediately if there was any sign of fever. Karl readily agreed. He was growing pretty tired of the hospital setting.

On the way to the hotel, Karl asked the shuttle driver if there was a McDonald's nearby. Not only did the driver know of one, he took a detour so Karl could get a Big Mac. Pretty nice! The rainy weather has precluded Mom and Karl from enjoying a pool-side session today, but they are looking forward to being outdoors tomorrow and Wednesday.

Their journey back home begins at 9 p.m. Wednesday night (3 a.m. Thursday our time) and they will hopefully be back in the comfort of their home by 6:30 p.m. Thursday, exhausted, but extremely happy to be home. What a trip this has been!! I'll be sure to let you know when he's home.

Again I want to reiterate how thankful I am for your prayers and concern. Blessings to you all.

Kerry

Count down

Just a brief update to let you know Karl's counts are going down/getting better every day thanks to your continued prayers. He's been told the IV will come out on Monday and he's hopeful he'll be released from the hospital then. He's also been moved to an ocean view room. I'm not sure it's making his stay any easier, but I do know he's very thankful to be alive -- it was a close call.

Carol Partridge and Mom moved out of their timeshare unit on the northwest side of Maui today. Carol departs for the mainland about 9 p.m. -- 3 a.m. our time. Mom will be moving into a hotel closer to the hospital (near Kahului) and she'll also be turning in the rental car. Fortunately the hotel has a shuttle that runs from the hotel to the hospital and the airport and in reverse. They probably won't find out until Monday about flight arrangements, but the social worker said she's shooting for departure on Wednesday, which means they'll be home probably Thursday morning. We're hoping Karl and Mom have a couple days to enjoy the north side of the island before they come home.

Mahalo for your prayers and concern.

Kerry

Big kahuna

The big kahuna, Karl's nephrologist Dr. Schwartz from U-M, called him today. He concurred with the staff at Maui Memorial -- Karl has to stay longer. He explained that it was important to take plenty of time with his kidneys and get the creatinine levels down to more normal levels. It's critical for Karl's health in the future and minimizes the chance of dialysis, which is definitely what they're trying to avoid.

The staff is carefully monitoring Karl's intake of phosphorus and magnesium. He was told both could be deadly if there was too much or too little in his system. With the state his kidneys are in at this time, they are unable to easily filter these elements with ease. Karl's also a bit anemic, which is also due to his kidneys not functioning properly. He is still receiving IV therapy to flush his system. Everyone is confident Karl will have all kidney markers back to normal by the time he is scheduled to leave on Wednesday. He was told he'll need to closely monitor his kidneys for the rest of his life and they will be especially susceptible if he's ill. Drinking plenty of water will be crucial.

In the meantime, social workers have been working with Mom to find a hotel closer to the hospital and get a flight back at a reasonable price. Hopefully Priceline will give them a refund or a credit for the seats that will go unused on Saturday. If anyone knows anyone that can help, please let us know!!

Now for some Karl humor. I asked him if he remembered anything about Saturday and shared some things that happened. He didn't remember. When they were getting ready to head to the clinic that day, Rodney told Karl he needed to put on a fresh shirt. Karl, in his confused and weakened state, reached for the suitcase nearest him. It was Mom's. Karl had put on one of Mom's shirts. As Rodney described it, it was tight and flowery. "If I hadn't stopped him, he probably would have put on a pair of your mom's underwear." We have all had a good laugh over that. Of course Karl has called Rodney a few choice names, which makes us laugh even more.

As I write this, Rodney, Terri and Khol are either sitting at the airport or are on the plane heading for home. Words cannot convey how thankful we are to them. I think the only way we can describe them is that they are angels on earth. May the angels in heaven bless them for their caring generosity and bless you for your prayers and good wishes.

Kerry

P.S. If there's little change over the next few days, I won't be posting, but I'll post something if I have any pertinent news.