Wednesday, May 21, 2008



Appointment with DrIV#2. I had already seen the x-ray from Monday. I will post it tomorrow with the updated wound picture. We are officially off the IV. The PICC will stay for another 2 weeks to see how the oral antibiotics go. The antibiotics are Doxy, one twice a day, cibro, two twice a day and ciplo, 3 four times a day. In addition to her other stuff. The big deal is no dairy 6 hrs before and 2 hrs after the cibro.....will make feeding Victoria - always a problem, much worse.

Dr suggested a year on this course of antibiotics. We will see the cost soon enough, I go to Walmart later.

I left to get CJ and Victoria went off to infusion. There is an antibiotic they add at the end when a PIC is not going to be used daily. Working out a schedule for dressing change and such took a little time. We will be back in IN on Tuesday. SLEEP IN WEEKEND!

We picked up some ice cream....Victoria will not be having much for a long time.



Earlier appointment to see if we could get in and out before CJ got out of school. Didn't work...almost! Infusion was fine, and blood draws for her weekly tests had no problems through the PIC. I had to leave and come back, found her crying. Everyone was walking around with their heads down...what the hell?

Victoria said it was just a passing thought that made her think of her mother. We left and talked about it later. Short story, she missed her mom.

Went home.

5:10p (ah ha! surprised you....)

CJ had an eye exam. Glasses on order. A tad nearsighted. She is VERY unhappy about needing glasses.



Cast change. We took pictures last week, so I am going to wait until Thursday's cast change to update those. Cast off, then X-ray, then cleaning, then new cast. Wound looked good but is not shrinking fast enough for me. The zinc helped the foot skin tolerate the moisture much better. The irritation was gone also. WN got a nice bunch of gunk out and the wound was very bloody. For the first time, it looked and acted like a hole in the body, red and bloody. Made me just a little erpy.

Still. All continues to progress. I will talk to WN about promoting closure on Thursday.

We did infusion right after the cast change so we didn't have to come back later. Numbers fine.

5/16, 5/17-5/18

5/16, 3:45p

Infusion was fine. BP and temp normal.

5/17, 9:30a YEA, sleep in!, we got there, very busy, in and out, no issues. BP in the low 130s. Temp normal.

5/18, 9:30a....see last entry!

Friday, May 16, 2008

Picture update and X-rays

To those with a strong stomach, I have updated the pictures.

I have also added a post with the x-rays.



Simple infusion today, no problems. Victoria had a little issue yesterday with a temp, or not. They took her temp 3 times, got one high (100.1) reading, and 2 normal readings....go figure.


Cast change. Very goupy and it is clear that 5 days is too long. There is irritation showing on the skin where it has been wet for too long. With WN we agree to return to the Monday/Thursday routine starting on Monday 5/19. The risk is too high for further tissue damage or additional infections. She did another heavy scrapping making it all look like hamburger but also did a big scrap on the edges of the wound...hoping to resume the strong tissue growth we have been seeing. I have pictures too. She added some medication to the irritation areas AND added extra medication to the same areas to prevent moisture from penetrating. (the stuff they put on noses...the white stuff)

Infusion. We talked about timing - we are usually the last ones of the day so we are going to try to come a little earlier next week -which, hopefully, will be the last week of infusion IVs


Odd detail about yesterday (5/12). Victoria had to appear at a couple of hearings (341's) and was in her wheelchair. The trustee was so polite I had to wonder if he had been body snatched.... The hearings were the easiest, most cordial I have ever witnessed with him. Bizarre.

Infusion. Slam bam, thank you maam. Done

And a piece of good news. They were able to get blood out of the PIC so they did not need to draw from a new site.

5/8 to 5/12

I apologize for leaving this unattended. Between dealing with the issues raised with DrIV#2 on Wednesday and being busy, it has slipped. Let's catch up.

Infusion was fine. They changed the dressing on the PIC line and her BP and temp were ok.

Cast change also was fine. Very goupy in the old dressing but it looked good. The edges seem a little less growth oriented and we talked to WN about scrapping them next time if they stay the same. The depth measurement is all over the place, 1.9, then 3.9, then 2.4, now 2.6. We are not sure what to make of it, only that it is clear things are improving. Pictures posted shortly. I also, after having a chance to think of it, want to look at the x-rays again. I asked one of the nurses that work with DrIV#2 if I could see them again, she said they could be viewed tomorrow (5/9). We were both somewhat subdued dealing with staff.

Just infusion. I had hoped to see the x-rays today, but they 'need a doctor's order'. Which is stupid...they are OUR x-rays. It was suggested that I go to x-ray and ask them directly, which I did. After a long song and dance about HIPAA (this is the law that protects your medical records from unauthorized disclosure) in which the x-ray supervisor VIOLATED HIPAA repeatedly, she brought up the x-rays with a release form. She also demanded a photo ID of Victoria - which we seldom have with us. One of ID staff vouched for Victoria but the x-ray person said that wasn't good enough...the IV stuck in her arm could be someone else....I promised to bring the ID on Monday.

5/10 and 5/11
Infusions at WEC, no problems. BP is again lower here than the weekly readings in IN. It has to be the early time (8am vs 4pm during the week). The PIC line dressing area is irritated and bruised. The mesh they put over the dressing keeps rolling, is too tight and keeps getting snagged on part of the PIC line. (I will post a picture in the next week of the PIC line). IN changed to dressing to move it away from the irritation. But we have stopped using the mesh (which seemed to be fine for 5 weeks) and started using a light compression sleeve the CT use. The irritation looks like a rug burn. I put some lotion on it when we got home.

Infusion. I had staff call down to x-ray for the x-rays and they said they would be up at the end of Victoria's treatment - why wait??? We had to call down again when she was done as they had not shown up. When she did arrive, I showed her the ID, she gave the release to Victoria to sign and then asked for the ID again to check signature(??). I said NOTHING. It was noted by the IN staff.

Ms x-ray storage person: You talked to me about Victoria's x-rays. This was two violations of HIPAA - talking to someone other than the patient and acknowledging that in fact Victoria WAS a patient. You did this for almost 15 minutes. You then discussed the x-rays with someone you didn't KNOW was the patient. Next time you CYA, you better use something better than a single piece of TOILET PAPER. stupid idiot.

I also apologized to BugN. She didn't seem to understand why, and I was not able to keep it together enough to explain. We see her on Friday...we'll see if I can do it then better.

We took the x-rays home and I will post the pictures of them shortly.

Wednesday, May 7, 2008


This will be a difficult post.

Arrived at ID for an appointment with DrIV#2. The x-rays were available and we got into a room quickly, but had to wait.

He came in and had the x-rays in hand. He looked at them and said, that it was very bad. I said I had seen them and thought it was difficult to see where the problem was. We began to talk about the future and what our options were.

[warning signals started going off in both of us]

He asked again if we had talked to a surgeon. We talked again about DrSur's options. He wanted to consider where to go from here. We talked about being against the amputation. And then, in a very round-about way, he said, it was inevitable.


WHAT? He suggested that our current course of treatment was just delaying the inevitable and that we needed to consider the amputation.

We were both VERY upset. He took me out to show me the x-rays in the hall on a light board. He put up the x-ray from 3/26 and the one from Monday side by side. I pointed out the recent one was not a good xray because of the distortion on the back of the heel. Then he pointed out the outline of the bone.

OH SHIT. It was not distortion. The heel bone looks like it exploded. Where in 3/26 there was a small (raisin sized) bright spot on a well defined bone (pointing at 7 o'clock), more than half the bone looked exploded to 3 or 4 times the size, diffuse edge and pointing at 9 o'clock. Devastating.

We returned to the room with Victoria who was crying.

I will not be able to recreate a conversation that lasted almost 90 minutes, but I flat out accused him (and his staff) of failing in their effort to contain the infection. We talked about a number of options, but in the end he had two specific things to say:

1. This infection will, in the end, cost Victoria her foot. We might get it healed, but the infection will ALWAYS be in the bone just waiting for another opportunity. He agreed we may have a 15-20% chance of getting it healed, but the infection will never be 'cured'. He repeated, several times, that a 15% chance of healing, means a 85% of failure. We repeated that amputation was a 100% chance of failure.

2. This infection will, in the end, kill Victoria. It might take a long time, but probably within the next 10 years, she will die and this infection will be the point we will look back to as the first fight in the war.

He will do everything he can to give us the best chance of beating the odds, but we need to be realistic. He wants us to deal with the reality that Victoria's foot will be amputated at some point. At best, we are giving her some more time.

I took those comments and inferences to mean he was just biding time, but he wanted us to know that was not his goal. He wants Victoria to be healed, but the nature of the beast is that it will never be cured. At some point in time, she will get another infection or this one will flare up again.

During this time, IN came in and gave Victoria her infusion. He gave us some time to talk while he saw someone else for a short time. When he came back, he said he was going to review the cultures and Victoria's numbers and come up with a oral antibiotic treatment that will, hopefully, be as good, or better than the current IV treatment. This is to help reduce our costs - which got us going on the idea that we didn't want cheap, we wanted the best. He argued that was his goal and that he would not sacrifice Victoria's care in any way because of cost.

For the moment, we will continue with the IV for another 2 weeks and get another x-ray. If things hold the way they are, great.

Understand, the issue for me is the trend line. It appears, for now, that the infection and wound are not getting worse, they are stable, they will never be cured. As long as the trend line down has been broken, I am happy (ier).

We left at 5:30. The building was deserted (it closes at 5) and we both cried most of the way home.

We picked up dinner. CJ is out for the evening fishing with Sue. Right now, we are both calm, but this is not over.


Tuesday, May 6, 2008



Arrived for appointment and checked in at X-Ray also. We had seen DrIV#2 for a moment yesterday and he agreed to come down and look at the wound when the cast was off. CT got the cast off and we waited for X-Ray to come get us....which happened within 5 minutes!

Into the X-ray room and the tech asked me to go sit in the waiting room, I declined and said I would wait in the hall. They let me in a few minutes later while they checked the films. And, of course, they needed to redo one and asked "do you mind waiting outside?" I said, "yes, but I will comply." We were done and left nicely about 5 minutes later.

Returning to the cast room, CT got Victoria up and ready for WN. DAMN the wound looks great! Good improvement even though the cast was on an extra day.

The cast SMELLS bad and the slipper was very wet from seepage. But the wound was great. WN measured and noted that she found the wound was deeper than originally thought, after a little change in angles, the wound is almost 4 cm deep. She believes it has always (the last month) been this way but it was hard to find till the wound was completely clean of dead tissue. Despite the depth, she said she felt the wound was progressing very well. DrIV#2 came in right behind her and got a chance to look. He glanced at the x-rays also. We will meet with him longer tomorrow.

WN then took out my favorite tool, the round scapel with a hole and proceeded to scrape every surface of the wound. When she was down, it did look like healthy....hamburger. A little of the bone was still accessible so she worked on it too.

After packing the wound with poop (the brown enzyme) and getting the wound covered, we talked about the schedule. Normally we would be in on Thursday, but there is no reason to go back so soon. However, waiting til Monday means 6 days. 5 days stretched everyone's comfort zone so we planned on returning Friday. But WN did agree that 5 days might not be a bad period at this point. So, starting Friday, we will do next Wednesday, then the following Monday, then Friday then Wednesday and so on. Maybe a month or so of that and then we see.

One issue that is becoming apparent, the tissue in the wound is not as attached to the growing skin cover. This might happen over time, but the two items are not growing much together. WN noticed also, but said it was impossible to predict exactly how each wound will heal.

I did not have the camera with today, so we will have to wait til Friday for the next look.

CT got a black cast on and we left. Victoria had lunch with Sue while I went off in search of a self-propelled mower. (hey, I am getting older, a little help would be nice!)

Arrive at IN. PIC dressing change day; blood draw for tests day; IV first, then changing the dressing. All fine. BP a little high still 150s. No temp. When the IV was done, they tried to draw blood through the go. Damn. Lab was called to draw the blood which happened quickly and 'easily'. We were done by 4:45 and headed home.

I have rearranged the garage so Victoria doesn't have to go around the car door going in and out...don't know why I didn't do is sooner.

Tomorrow we find out how much longer on the IV.


Checked the calendar Sunday night and it didn't have a time for cast change on Monday. We had early court so I planned on calling as soon as we got to the office after the hearing. Which I did. No appointment for today in the cast a matter of fact no appointments EVER again in the cast room. This is not good. After some calls and best efforts, we got a 10am for tomorrow (Tuesday).

Infusion was fine. BP back up towards 150. No temp.

5/2, 5/3, 5/4

Friday, 3:30pm & Saturday , 8:15am & Sunday, 8:15am

I am bunching these up because with no exception the appointments were in, out. No fuss, no muss. I did see DrIV#2 on Friday and he agreed that getting an X-ray of the foot when the cast was off prior to our appointment with him on Wednesday was a good idea. He put the order in (and then I found out he was off and had come in on his own time). Sorry doc.

Temps and BP have been fine, as a matter of fact, over the weekend, Victoria's BP was into the 130s.

Thursday, May 1, 2008


Cast change. The timing of today's cast change meant I was not going to be in the room when WN did the check and pack. I did notice that two spots where I had taken Victoria's blood sugar on her wounded foot have not been clean pokes. No more blood tests from that foot. (WN agreed!) CJ and I got back just as CT was beginning to work on the cast...which I thought was going to be red and black. In honor of that color scheme, both Victoria and I were wearing black shorts and red t-shirts. Apparently the fix was in....purple and pink.

The wound is...interesting. When Victoria is out of the cast, her foot does a lot of moving. This is good as it helps with circulation. Her leg and foot always look dark when the cast first comes off but it pinks up nicely in about 5 or so minutes. Part of the reason is that her leg is held in place and so the muscles don't aid much in the circulation. Her leg has to rely almost entirely on the circulation system. The previous packing was very goopy and had noticeable blood staining. None of this is bad. However, it does make Victoria's foot feel a little like she is walking in mud. The wound itself has begun 'sticking its tongue' out. When Victoria flex's her toes up, the tissue in the wound...well, it sticks out of the wound. Not much, but from the side....

Cast change done, we went off to IN. Maybe I shouldn't have, but I did note to the IN staff that I don't like BugN. From the looks passed around, I either said something really bad, or something well known. Victoria thinks I said something bad. I said I had no problems with the staff (in as much as their professionalism and their caring), just I had some disagreements.

IV went smoothly. BP just back over 150. Temp ok. The weather was nice when we went in, not so when we came out.