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