Willie Nelson's Got Nothing On Us

On the road again, just can't wait to get on the road again...

If all goes as planned, we'll be on the road late tomorrow morning after Karl meets with the physical therapists to discuss what he needs in terms of a seat and a new power chair. We've had a flurry of activities the past few days. Karl's had his rear mapped and has been getting out of bed to build strength as well as giving all the nurses a rough time. Mom and I have been packing and she's been learning how to take care of Karl's wound. Stitches are due to come out on Monday.

Dr. Yaszemski, or should I say Gen. Yaszemski, left yesterday for a two-week stint with his Air Force group. Before he left, he told Karl what he thought about his condition: he hopes the infection can be controlled with the antibiotics and he has prescribed Karl eight weeks of daptomycin and another antibiotic I can't remember. If he can't tolerate that, they cut it back to six weeks. He will go every day to Bixby to get these drugs. We are trying to change that to Herrick, and if that doesn't work, perhaps Saline. After the IV infusions, he will go on oral antibiotics. We pray no new dicubitus ulcers form. If they do, Karl will have to come back for surgery to remove the hardware. We truly hope that doesn't happen because that could mean a very long stay for Karl.

Karl's physical therapists think some of the metal in his back is digging into the muscles in his rear when he sits. We agree. And when he transfers from uneven surfaces he sometimes lands with force on his bum. So he also has to work on building up his strength. The therapists have advised us to have Karl fitted at Mayo (since they are about the only hospital in the world that does this kind of surgery). Of course we want to be sure he gets the appropriate power chair that fits him best to prevent further injuries and ulcers. This process will take about eight weeks and since Dr. Y wants to see Karl in April, we figured it makes sense for Karl to get fit here in Rochester.

In terms of Karl's overall health, his heart rate is still a bit high, but his blood pressure is normal. His kidneys are the best they have been in over a year (creatinine was 1.9 today!). His INR (blood thickness) needs work and he'll be giving himself heparin injections until he gets that in check. His hemoglobin is still low, but higher than it's been in quite some time. His heels have healed significantly with the new boots in which he's styling. The Rooke boots, designed by Dr. Rook, a Mayo physician, look like mukluks. Karl said they are very comfortable.

Anyway, we are hoping to be home sometime tomorrow (Thursday) night and we are all looking forward to being home. Thank you all for your prayers and good wishes. Oh, by the way, Karl's neighbor, Joline, is doing much better. I have absolutely no doubt that your prayers helped her turn the corner. Today I walked by her room and saw her chatting on the phone.

Blessings,

Kerry

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