Holding pattern

Dr. Yaszemski came in bright and early today to tell Karl he wanted him to stay in his Clinitron bed to heal. The large amount of steroids Karl is on causes him to heal a little more slowly than most. The steroids are also the reason Karl's skin breaks down so easily when stressed. The internal medicine doctors think the added stress on his body is causing his heart rate to jump. To counter that, they've given him more steroids and a bolus of fluid. It's a Catch 22. Even with that, Dr. Y feels Karl's incisions are healing well and he said he'd like to try to get him out of here by the end of the week. Yay!

Dr. Y also told Karl he is not concerned about the new bug (staph coagulen negative) they found. In fact, he thinks it may be a contaminated sample because it grew on only one of four cultures they took and it also started growing well after the enterococius (strep) they feel is the major culprit. When they discharge Karl, he will probably need 6-8 weeks of daily IV antibiotic therapy, which brings us to other challenges the staff is working on.

Medicare will not pay for at-home IV therapy. They WILL pay for IV therapy at a hospital. This makes little sense. It's neither cost-effective for Medicare (nor you and I as tax payers) nor convenient for Karl. Daily trips to Herrick for the next 6-8 weeks will probably not be good for his rear end, but he'll do what he has to do. Another issue is Karl's special bed and mattress, which provides Karl constant air movement and pressure relief. The problem is, Medicare mandates that Karl have a stage IV pressure ulcer (to the bone/metal) in order for him to keep it for more than three months. They apparently are not thinking of prevention.

So Kelly, the unit CNS, is going to draft a letter to Medicare asking them to make an exception with all of the reasons mentioned above, plus all the medical jargon explaining Karl's situation. She will then run it by Dr. Y and he will sign, hopefully as Assistant to the Assistant US Surgeon General, Air Force Brigadier General and Mayo Surgeon. It's so good to have him on our side.

Now for a special prayer request: Karl's neighbor in the room next door, Jolene, a 31-year-old mother of two, who is also a patient of Dr. Schuetze's in Michigan and who had a hemi-pelvectomy recently, isn't doing so well. If you could send a few prayers up for her, we'd all surely appreciate it.

I'll let you know as soon as we know anything.

Love and blessings,

Kerry

Bugs

We finally have some results to share with regard to the deep tissue cultures they took from the hardware in Karl's back on Monday. On Wednesday Dr. Yaszemski told us there was, indeed, some bacterial growth. We were not thrilled by the news. But on Thursday the infectious disease folks told us they could get rid of most of the bug with intravenous antibiotics and then keep it under control with oral antibiotics. He would have to undergo another four weeks of I.V. antibiotics at home and then would continue on pills.

Karl's labs are better than they've been in almost a year. Doctors are thinking Karl doesn't produce enough of the protein albumin. Albumin helps the body to absorb fluid and may be why he constantly needs a bolus of I.V. fluid to up his volume. They are going to study that further and may be able to improve those levels with a supplement of some sort. We were also told Karl needs a new Roho cushion and power chair so that the skin on his rear doesn't break down as easily. His backside will be mapped on Monday to figure out the pressure points. After that and if no other culture grows, we could be looking at Tuesday or Wednesday for a discharge date.

Today, however, the infectious disease doctors reported that they, unfortunately, found another type of bacteria. It is a slow-growing bug and I.V. antibiotics are effective, but there are no pills to keep it under control. We don't know what exactly Dr. Yaszemski will recommend. We're pretty sure he wants to avoid taking out the hardware because that's major surgery. And if Karl can't get along without the hardware, it will require another surgery to put it back in and at least a month or two of hospitalization to recuperate.

Dr. Y is gone until Monday. We know whatever he decides will be in Karl's best interest. When we find out, I'll let you know.

Blessings,
Kerry

Surgery day

Today Karl got wheeled down to surgery about 11:30 local time. Soon after he left, Mom and I went to the Canadian Honker for lunch. We don't know what time he got into surgery, but we know as of 2 p.m. CST his surgery was in progress. He was upbeat and confident all would go well.

Dr. Yaszemski stopped in yesterday and said they would take out the metal if it was at all loose. If it is loose, and Dr. Y thinks it is based on CT scan images, that means Karl isn't using the hardware and that means it has a good probability it won't have to be replaced. We are all in agreement that that's the case.

Anyway, I'll let you know when I know more. Until then, here's a photo of Karl taken this morning just before he was wheeled down. Thumb's up!!

3:30 p.m. CST: Just got back from a visit on the 1st floor with Dr.Yaszemski. He said Karl is just fine and is awake in the recovery room. In fact, he just gave Dr. Y thumb's up. Dr. Y said everything went fine. He checked all areas for pockets of infection but couldn't find any. He tugged on the hardware to see if it was loose, but it wasn't, so he left it intact. They took deep tissue cultures and decided the wound was caused from outside in rather than inside out. They cleaned up some of the bad tissue, found and removed the gauze (about 4 inches worth) and then sewed him up. He should be back in his room by 4:15.

Thank you all so much for your prayers and good thoughts. We still aren't done here, but we are a little closer to getting the answers we need.

Blessings,

Kerry



Just in case

I don't know about you, but there are times when the right words for a prayer escape me. But last night's blog Post triggered a response from a long-time friend who ALWAYS seems to have just the right words. If you're in need of a prayer that addresses Karl's needs, Cathy Jenkins wrote the prayer below that hits the nail on the head.

I am praying for Karl, and I pray in the NAME of JESUS, that the doctors will find the infection, get it cleared, once and for all. That the kidneys, the heart, and all chemicals, cells, tissues, organs, and body systems line up with the WORD of GOD that says... "HE sent forth HIS WORD, and healed him, and delivered him from all destructions, rescued him from the grave, and makes all bitter expericences sweet."

I agree that Karl can live normally with no hardware, and that his body returns to good health. I agree his surgeries all go well, with no infections, inflammations, blockages, or any pain or further problems in JESUS' NAME. Amen, and Amen!!!!!

Indeed, Amen and AMEN!

Exploring options/Preemptive prayers

We just found out Karl will have surgery on Monday to debride and wash the decubitus ulcer, take out the gauze that's stuck in there, check out the wound more thoroughly, and take deep tissue cultures to pinpoint the cause of the infection. He will likely be the second case of the day, which means surgery will begin late morning or early afternoon.

Dr. Winder, who is Dr. Yaszemski's resident this quarter, told us the surgery would take approximately two hours and would help them determine the type of antibiotics needed to defeat the infection as well as how to proceed with the hardware removal. Plastic surgeon Dr. Mardini (who worked on Karl in 2008) and Dr. Y will be present.

Karl was taken off his current antibiotics to allow cultures to grow and received a liter of fluid last night to bring his heart rate down, his blood pressure up and his creatinine levels more in line. His creatinine was just a bit high and they want to keep Karl as close to normal as possible so that surgery will go smoothly. He also got a new pair of Rooke vascular boots that will hopefully help the tissue on his heels to heal quickly.

His nurses and therapists keep filtering in to say hello as they get the news that he's back. They offer him words of encouragement, knowing that our prayer is that he can function without the need for hardware in his back. It would solve so many problems, we think. So, if you need something specific for which to pray, ask God that Karl's surgery on Monday reveal the information his doctors are seeking, that the wound be completely cleaned, and that everything goes smoothly. And then if you want, it probably wouldn't hurt to send up a prayer or two asking that Karl's next surgery go well, too, and that his body supports his weight without the need for hardware. Call it a preemptive prayer if you like, but every little prayer will help!

Have a wonderful weekend! I sure hope it's warmer where you are (the high tomorrow will be 4 degrees).

Blessings, Kerry

Happy New Year! Getting to the "bottom" of it (heheheh)

If someone had asked what we hoped the new year would bring, we'd all say, "Good health for Karl," right? Well, we're hoping we took a step in the right direction by bringing him out to beautiful, sunshiny, incredibly cold, Rochester, Minnesota, home of the Mayo Clinic.

Today we met with Karl's orthopedic surgeon, Dr. Yazsemski who, we hope, will figure out why Karl continues to get deep, decubitus ulcers that run from the surface of his rear all the way to the hardware in his spine. The first ulcer, you may recall, was "fixed" during a trip to Mayo in August/September. A new surface ulcer appeared soon after Karl made a trip back out to Mayo over the Thanksgiving holiday to have a suspect mass on his kidney oblated. (All is well in terms of masses/tumors/cancer stuff, by the way). Early in December our dear friend, or should I say, angel, Gloria Brooks came out and suggested we have a doctor look at the ulcer as it seemed to be tunneling a bit.

Because Karl's oncologist, Dr. Schuetze, is so wonderful, he agreed to be Karl's primary care doc/quarterback. He kindly ordered home care and after an initial assessment, it was decided Karl needed physical therapy and visits twice weekly by home care nurses. On the first visit by the home care nurse, she discovered that Karl's wound had gotten dangerously deep. During that visit, a piece of gauze used to pack the wound became entagled in a screw or piece of hardware in Karl's back. That was on Dec. 23. Taking no chances, we went to the emergency room at U-M where they said Karl needed to have all the hardware in his back removed because it was causing continued infections, which would never ever go away. They said surgery wasn't needed immediately and told Karl to go home and enjoy Christmas, which, by the way, we did!

Karl decided he would rather have the doctors who put in the hardware assess the situation and so a call was made to Dr. Yazsemski. The response, as usual, was, "When can you get here?"

Today Dr. Y's first question was, "Is it easier for you to be in the hospital or at your hotel room for lots of tests?" That was an easy answer. And all the folks up here on the 8th floor are giving Karl the welcome and smiles he always gets. I guess if we can't be home with our family and friends, it sure is nice to be where we know Karl's going to get fantastic care and true concern.

So, what's to come? At the very least we know the gauze has to come out, but we don't know how much is there or where it is. So Karl will get a CT scan, perhaps even tonight. After running tests to pinpoint the source of mild infection, Dr. Y will consider ways to treat it. He said he suspects surgery will be on the horizon. He thought that it probably was the hardware causing the problem and said he'd probably take it out. Then he'd wait to see how Karl did without it. In this case, Karl relies on the structure to help him transfer from bed to chair, etc. After a week or two, if Karl can't live without the structure, Dr. Y will put it back in.

Dr. Y wondered how long we had planned to be in Rochester. We told him we were here as long as it took to get the problem solved. He said, "Good. Everything's worked well for Karl so far, but now it's time to make some adjustments."

How long will Karl be here? We don't know, but we do know that we're in the right place and 2011 promises to be a whole lot better than 2010! Thanks for your continued prayers.

Blessings,

Kerry

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!