The next day, one of the surgical team came in and removed the wrapping around Jill’s leg and changed the dressing. He said it looked great and it was healing properly. I counted 41 staples in the approximately foot long incision. Wow. We were all very encouraged to see for the first time in months, her leg was straight out, flat on the bed. Later, Dr. Sim stopped by to examine her and was very pleased with how her knee looked. He encouraged her to do the exercises as much as possible to gain back flexibility, but to stop when it hurt too much. Small baby steps are needed. He encouraged her to be patient and slowly she’ll see progress. He also told her he’d send up someone from their pain management team to assess her pain and get her comfortable enough to keep her doing her PT sessions.

She then had her first PT session and we held our breath as the therapist gently helped Jill get her leg over the side of the bed and foot onto the floor. We exhaled. Nothing bad happened! He showed her some exercises that she could do even while lying in bed and then told her he’d be back in the afternoon.

A Complication

Later that afternoon, there was a knock on the door and in walked Dr. Razonable with the Infectious Disease Department at Mayo. He asked if we knew why he was stopping by and if anyone had spoken to us yet about the cultures taken from Jill’s knee during surgery. We did not and they had not. He said that during all surgeries at Mayo there are a number of cultures taken from in and around the area being operated on to test for any infections that might happen to show up. It is very rare that anything ever does but it is still a routine thing they do to protect the health of the patient from any foreign bacteria being present. Three cultures from Jill’s knee were taken to the lab. One of the three tested positive for * Strep (Strep); the other two are still returning negative results. While it typically takes seven to ten days for results to be conclusive, the presence of any infectious disease must be treated aggressively and immediately. Now that there is a “foreign” object in Jill’s body (the metal and plastic from her new knee parts), it’s critical that no infection be permitted to get in or several not great things could start happening – anything from the hindering of the healing process, to the bacteria attaching itself to the artificial joint material and rejecting any attacks from the body’s natural defenses to rid it from the area. He stressed the seriousness of the situation but assured us that the best course of action was to immediately start treatment with antibiotics. Depending on the results over the next couple of days, they may choose a more aggressive method of treatment which would require receiving the antibiotics daily by IV, administered in a hospital or a clinic.

Fortunately, by the time we left the hospital nothing had grown in the other two petri dishes, so Jill will be taking her antibiotics orally. Hopefully, in several days the results of the cultures will confirm that there likely is no infection. If so, we will continue the antibiotic regimen for two months, just to be safe.

* If I (Geoff) caused some alarm among any of you, I wanted to apologize! Initially, when the doctor said strep I heard Staph, which is considerably a much more serious situation. If you happened to have received such a text or VM message to that effect, I apologize. You can imagine my relief to be proven wrong, again. This time I don’t mind at all.

It took until Friday morning to really get Jill’s pain med situation figured out. She has been on some significant drugs for so long now that her baseline is high. To really get over the pain now takes timing and combinations of meds. But the benefit to one area often affects other areas. For instance, the amounts of pain meds needed to take care of her pain also take care of her appetite.  Her significant loss of appetite has resulted in significant weight loss. This will likely be a battle for the next few months, but as her knee improves and the pain lessens, so will the medications needed and she should start gaining again. Her usual sized 8-10 wife is now a 2-4. I, along with several friends, have offered to donate our own extra fat cells. She doubts that medical science has discovered a way to pull that off…literally. Just think how rich that doctor would be who could say, “Sure, I can do a fat transplant. You a donor?” I would be weigh down with that.

Sorry.

Friday we got Jill discharged and back to our friends’ house where she lowered herself onto the couch downstairs in her “area” and fell into a relaxed sleep. Fortunately Jill’s folks, John and Joanne Wilson made the trip from Ohio and were staying with us at Todd and Peggy Lightner’s house. Todd and Peggy have been amazing hosts, opening their home to us and our family over the last 3 trips. It’s a calm and relaxed environment in which Jill can heal. On Saturday morning, just after John and Joanne left for home, we received a CPM machine. A Continuous Passive Motion machine is a device into which Jill straps her leg.  The machine slowly bends and extends her leg for her. That thing works! Saturday morning she woke up with her leg being very stiff, but after a couple of hours in this machine she had regained the mobility again. This machine will really benefit her, especially in the short term. (There will be one at home in California waiting for us when we get there.)

On Monday, we saw Dr. Sim again for our last check up before we leave town. He thought the knee looked good and we are cleared to head home tomorrow. We had blood work done and are waiting for the results. Jill is still very weak and can’t walk but a few steps before getting winded and having to sit. We had blood work done earlier today and we are now awaiting results. Low hemoglobin numbers could explain her weakness. But Jill is in good spirits and is resting up for the long flight tomorrow. Hopefully it will go smoothly. We are very ready to see the kids again.

Thanks again for all your notes, prayers, meals, taxiing and general help during this time.

Last night, as Dr. Sim predicted, was very difficult. Jill had woken up in pain and tried to go back to sleep. Big mistake! It’s harder to “catch up to the pain than stay ahead of it.” The doctors typically ask what her pain level is on a scale of 1 to 10. Right after the surgery she hovered around a 7 or 8. Last night hit 10 and stayed there for a while. I woke up to her sobs and called the nurse. It took a couple of hours and various calls or visits from the pain management team, but we eventually got it under control and she was able to sleep again, in between the blood tests and checking vitals.

Years ago there was a comedy show in Newfoundland called CodCo. If memory serves me well they had a skit which my brother Rodge quotes from time to time. This poor soul, Mr. Hynes, was in the hospital for some ailment and his nurse came into his room saying, “Mr. Hynes! Mr. Hynes! Wake up! It’s time to take your sleeping pill!”  I think of that every time Jill drifts off and someone comes in to help her. It’s in times like these that Jill says I’d be a great nurse. I’m great at interrupting!

We get to all meet with the surgeon this evening. So more later…

Last Three Weeks

The past three weeks since our last Mayo Clinic visit we have felt like we’ve been in a holding pattern. Like a plane circling the airport waiting to land, we have been working on PT exercises and eating whatever high caloric foods we could find (for Jill only, those foods automatically find me) waiting for our flight day to come and we head back to Mayo for Jill’s knee replacement surgery. We have successfully worked with our local doctors to keep Jill’s hemoglobin and INR numbers in the sweet spot for surgery.

The flight from Fresno went fairly well. There are few comfortable positions for Jill anymore, so the flight felt a little long this time.  The pain has increased some in the past week and her knee has seized up more so that she can’t place her whole foot on the ground. Walking with the walker has slowed and become more labored. Jill decided to try sleeping in her own bed upstairs and, though it wipes her out, she scoots up the stairs on her rear end, one step at a time. We have a downstairs walker and an upstairs walker so she doesn’t have to carry one with her each time. At the top of the stairs is a chair, which she uses to get herself into a standing position and then pivots to the walker. It’s work, but she feels more independent.  She can fold laundry but still cannot prepare a whole meal and do most housework chores. Though the family is able to compensate, she is still very frustrated not being able to do it herself.

Surgery Schedule for Morning – April 24th

We arrive at the hospital and check in at 5:30AM and surgery is scheduled to begin at 7:30AM. Though the normal time for a knee replacement surgery is about 2 hours, the doctors have scheduled the OR for 4 ½ hours in case there is any extra time needed to work around the unique challenges with Jill’s knee. The doctors hope to have her on her feet by the end of the day. We hope to be discharged by Thursday or Friday and fly home on Tuesday of next week, exactly one week after the surgery. Please God.

The Scale

Today as we walked through the subway level of the Clinic, between the Mayo and Gonda buildings and right near the entrance to the cafeteria, we came across an old scale. As we passed it Jill said, “Oh, I’d love to know what I weigh!” I tried to think of a way that this could end well and wasn’t coming up with any. “Are you sure?” I said with a not so serious tone and acted like we should keep walking. “No, I really want to!” said my extra thin wife. So, I helped her out of her wheelchair and lifted her onto the scale. Thankfully, the needle moved. But I don’t think she was bothered by it as much as I was. I think it’s illegal in most states for a husband to disclose his wife’s actual weight, so I’ll keep the number to myself. However, I will say this, because I like to live dangerously, that she weighed 6 pounds less than the day I married her, 26 years ago. She was a featherweight then, but now? Let’s just say I’m thinking about tying sandbags to her walker whenever she goes outside.

A Sign in the Sky

So we pull out of our driveway at 8AM Sunday morning and head north toward Fresno when I look up in the sky in front of us and see a scene like one from out of a movie. A fireball, looking white-hot with a long trail of smoke, was falling out of the sky directly in front of us. I yelled, “Meteor!” Jill and Trevor looked up just in time to see it shoot across the morning sky and burn out. We’d never seen anything like it! It was brilliant and , as we later learned, was witnessed by people in Nevada and California.

I’m not one to look for signs in the sky or messages from God under every rock, but this extraterrestrial sighting did get me to thinking. Sometimes things happen to us that are unplanned and unexpected. Sometimes they are events that seem insignificant or unimportant at the time, but later, in hindsight, a purpose or a focus occurs to us. These past few months have been such a time. In December of 2011 we had a list, a plan for this year. Nothing that has happened since was on that list. We look for signs of God’s handiwork in the mundane and in the suffering moments. And in the middle of the walking out the next steps, a fireball falls. A random natural meteoric occurrence that, for a moment, made us fix our eyes on the sky.

So today, we trust and pray. We believe in the One who ultimately connects all the dots for us. And ask that He guide a gifted surgeon’s hand to restore a knee that has knelt with thousands of people in prayer for reconciliation and healing. I think that that OR today will be a place of worship, and a place of healing, hosting a sacred event.

We left Mayo with a plan and some very important dates on the calendar.  Jill’s knee replacement surgery will be performed on April 24^th. We will fly back to Mayo on the 22^nd and stay until the 30^th.  She will be in the hospital for 3 days and we will stay on for a few more just so the doctors can be sure there are no complications. She should be on her feet the next day and with PT she should be walking within days, first with a walker, next with a crutch, and then progressing to completely on her own. We hope for a speedy recovery.

It was also decided by the vascular team at Mayo that we should leave the “filters” in her femoral arteries until four to six weeks after the knee replacement surgery. This way, if any clots happen to form as a result of the knee surgery, they will add an extra barrier, preventing them from travelling to vital areas.  We will return again in June to have the filters removed. We hope to eventually wean Jill off the blood thinners and pain medications, and with changes in diet and exercise, pray that the bleeding issue remain significantly reduced.

So now we are home and have seen our local doctor and he is pleased with Jill’s progress. Her hemoglobin numbers stayed high (for her) through our trip which gives us hope for our future excursions back to Mayo.

Thank you so much for those who faithfully support us. We’ve said it before but we will keep repeating it. We are humbled and deeply grateful.

Our next appointment was with Dr. Sim (Orthopedic) and his team. He pulled out the X-Rays from last December and the ones taken this morning and put them side by side. He first drew our attention to today’s X-Ray and pointed out this area where there should be space between the bones, the place where the cartilage should be; there was none. It was simply bone on bone. Then he showed us the X-Rays from last December when Jill was here in the hospital. The knee appeared fairly normal. We were shocked. Even to our untrained eyes, it was obvious that the knee had deteriorated significantly in the last 3 months. The cartilage was all gone and even some bone had worn away.  He then said, “We are going to have to replace the whole knee.” Wow. We started asking various questions, trying to wrap our heads around this completely brand new thought. At one point Jill started to ask a question beginning with, “So, if we choose to do this,…”, at which time Dr. Sim politely interrupted her and said, “There’s no ‘if’, there’s only ‘when’. Your knee is useless to you. You will never be able to walk on it again.” Then he presented a plan to us that began to look very promising. Basically, they will replace the parts of her knee that interact or rub against each other with metal and plastic parts, even adding to her kneecap. It gives me pain in my teeth just thinking about it! However, he believes that within three months, Jill could be walking and functioning normally, and in a year be completely through the healing process. This sounds great to us.

The only thing to check out now is if the deterioration was caused by an infection as a result of the blood and fluid in the knee, or simply by the blood acting as an irritant and wearing away the joint. They aspirated her knee by injecting saline and then removing it again and took samples to test. If it’s an infection we’d need to treat that before attempting surgery. We should know more tomorrow.

After our meeting, Dr. Sim called in his colleague, Dr. Driscoll, a cardiologist, who is a legend in KT circles and the foremost expert on the syndrome. It was like talking to the prominent expert on Jill. From a husband standpoint, I had an overwhelming urge to take notes, but in the end, resisted. He reviewed her case history, examined her and interviewed her. He spoke with the vascular surgeon who worked with us in January and took notes. Then he reassured us that we were on the right track.  As he left the room, we looked at each other in amazement and thanked God for the care we are receiving. If we had to hand select the doctors we could or should be working with, who would know Jill’s unique situation – of all the doctors in the world – these are the ones!

The prayers of all of you – so many friends and strangers alike, from all over the world – have had an effect. Clearly, God is planning our steps and up to His usual, loving stuff.

Our first appointment was with one of our favorite doctor’s at Mayo, Dr. Tollefsen. It was like meeting an old friend. She is a specialist in KT Syndrome and was the doctor who first suggested Jill may have CLOVE.  She examined Jill and got caught up on the events of the past 2 months. She will be monitoring Jill’s progress as she walks through meetings with other departments and will advise when needed. She was thrilled at Jill’s progress and felt like she was finally meeting the real Jill. Dr. Tollefsen was the very first doctor we saw that first morning we arrived here after our 38-hour drive here last December. Quite a contrast.

Then we were off to Vascular. Dr. McBane was also one of the first doctor’s we saw in December and he was quite happy with Jill’s progress so far. He is one of the doctors deciding when to take the “filters” out of Jill’s femoral arteries and when to wean her off the blood thinners (if ever).  He wants to hear what our Orthopedic Surgeon, Dr. Sim, says about the possibility of surgery in our meeting with him tomorrow because that would determine how his treatment schedule would proceed. He believes it might make sense to leave everything as it is until after surgery. We agreed with that conclusion.

Finally, we had a meeting with Dr. Dozois, our colon and rectal surgeon. He was very happy with the progress Jill has made and feels great about her chances of treating her symptoms with aggressive diet and exercise programs. Surgery is always an option but it may not ever be necessary with healthy lifestyle choices.

So, we are very encouraged and tried. Came back to our host family and had steaks on the grill and great conversation. Now it’s time to sleep fast. We have blood work to be done at 7:15 AM!

We will begin on Monday morning with several doctor’s consultations. From there, we’ll likely schedule a time for the filters in Jill’s femoral arteries to be removed. Typically the filters are only supposed to remain in place for three months. She would then stay on the blood thinner medication for another three months (best case scenario) and then be weaned off it – our ultimate goal being to get her off all meds entirely.

On Tuesday we meet with an orthopedic doctor and a KTS specialist (Klippel Trenaunay Syndrome) to try to determine the best course of action for getting Jill’s knee functioning again. This is a very important meeting and will likely determine how our next few months will go. We need to determine any surgical or PT options to try which haven’t been explored up until now.

We are really hoping that all that needs to be done to determine the next steps can and will be accomplished by the time we need to leave to come home on Thursday.

So please pray for:

1.)    Doctors to have wisdom and ability to come up with a clear and timely plan for this next phase of treatment.

2.)    Our plane flights and all that is involved with the trip (yes, we’re flying this time, thank God!)  This will be our first time flying with use of a wheelchair and the special arrangements needed for flight with a disabled person. And then we have Jill’s special needs too! (Sorry, couldn’t resist!) It’s gonna be a long exhausting day for her. Please pray for strength.

3.)    The kids at home. We have so many friends stepping in to help, but it’s hard for the kids to see us leave to go back “there”. Last time didn’t go quite as planned.  And it’s hard for all of us to be separated. Please pray for comfort.

Thank you again for all of you who have helped, encouraged, prayed and supported us during this weird and unprecedented time. We are humbled. You held our spiritual arms up, made our emotional hearts glad and at times kept food on the table for us. We thank God for you every day.

We will try to make daily reports from Mayo, so check back often to see if I can actually pull it off this time.

Last December Jill was bending down to pick something up off the floor when, while her knee was completely bent, she felt and heard a pop in her knee. Immediately she felt her leg filling with fluid and within an hour she couldn’t bend it and it was quite painful. After several hours her knee was at least twice it’s normal size with the swelling beginning halfway up her thigh down to almost her ankle. The next day we went in to see our GP doctor and he sent us to see the orthopedic doctor who suggested draining the knee.  He drained 100cc’s of mostly blood from off her knee which brought some temporary relief but within a few hours it was back the way it was before. (Later, at Mayo, we learned that because of the clotting that was going on at that time, draining the knee was just creating another area prone to forming clots, though there was no way for us to know it at the time). Over the next several weeks the swelling slowly subsided, in fact it wasn’t until we were back in Visalia undergoing physical therapy that it looked close to being back to normal. The Mayo doctors concluded that to try to do anything invasive at this point would not be smart as it may produce more clotting. “Let’s get the clotting issue taken care of and treat the knee with wraps and PT for now and see how it responds.”

Well, as blood slowly drained from the knee joint and surrounding tissue, it left a residue. If you’ve ever had blood dry on your skin and you try to remove it, you may have noticed that it’s kind of gritty. That is what is left throughout Jill’s knee joint and surrounding tissue. It’s like sand in the joint and has restricted her movement. PT has helped greatly and Dr. Kevin Bartel has gotten her joint to straighten to about 10 degrees from completely straight and to about a 75 degree flex point. She can support weight to that leg only slowly and in a standing position. She cannot take a step forward. With the assistance of a walker, she can take one step at a time leading off with her left leg.

This is not the life threatening part of Jill’s ordeal, but it’s probably the most debilitating. She can’t stand for very long, even with her walker. And without significant pain medication even in a resting position the pain is unbearable. This also restricts her movement for any cardiovascular exercise, which will be crucial for her to move forward in strengthening her heart, lungs and overall systems. The medication works but its side effects include difficulty in focusing at times and drowziness.  Jill is VERY ready to move on from this stage.

Our hope is that this next trip to Mayo will actually produce some clear direction for how we should treat this knee. Is there a surgical option or another kind of more aggressive therapy or…something?  We are asking God to direct.  Your prayers toward this end, as always, are greatly appreciated!  We have seen His intervention throughout this season and believe He is in control and we can trust Him!

On Monday Jill’s blood work revealed her white blood cell count to be elevated which indicated an infection of some sort. It turned out to be a bladder infection, which isn’t a very big deal normally, but with Jill’s body dealing with so much, everything is a big deal. The doctors put her on an antibiotic that worked in cooperation with all the other drugs she is on. Thankfully, her hemoglobin number was 10.1, a good high number for her (above 12 is usually considered normal). The rest of the week was fairly uneventful as Jill’s body began to heal. We think the antibiotic actually helped the bump on her hand to heal as well.

Over a month ago we decided that Geoff should take a weekend to help chaperone Trevor’s high school choir trip to Disneyland. Geoff tries to do as many of these kinds of events for the school as his schedule allows as a way of giving back into our local education program; the other up side is that he also gets to hang out with Trevor and his friends some too. He loves getting to know the kids and encouraging them in their life goals. So Trevor and Dad got on a bus full of kids at noon on Friday with plans to return Sunday evening at 7pm. We had friends volunteering to do “shifts” with Jill and the girls – taking Jill to doctor’s appointments, preparing meals, running errands, etc. You can imagine Geoff’s concern when, about an hour and a half into his trip, Jill calls him from the doctor’s office reporting that her hemoglobin had dropped down to 8.5 from 10.1 just a few days earlier, and, that doc was sending her to the hospital for another blood transfusion. After discussing it for a while, we decided Geoff should stay with the choir and that we’d take our friends up on their offer to help on Jill’s end. It was more than our friends had originally expected, but they seemed to be glad to jump in.

Jill’s blood transfusion took all day Saturday, from 11AM to 10PM, and Jill finally left the hospital relieved but drained. Sunday she felt the normal “lift” from suddenly having more blood.

During our next round of tests and doctor consult on Tuesday, it was explained to us again that the treatment to keep Jill’s INR number in the therapeutic range (blood thinners) and the treatment of her regular iron infusion therapy which keeps her hemoglobin count in a safe range, conflict with each other. So there is this constant battle to adjust the medications to find an “acceptable” range. All of this can be very frustrating and a bit worrisome, but our Visalia doctor is incredibly patient and tenacious… and kind. God knew exactly who we would need here at home taking care of us and we believe He hand-selected Dr. Havard.  We are very grateful.