Catching up

It has been a while since posting, my apologies.

Victoria came off the IV antibiotics and started on oral ones. To the tune of 16 pills a day. It turned out that she could not tolerate them all. We have, after talking with DrIV#2, stopped taking one of them - the 12 pill a day one that cost a ton. CJ and I have a source of antibiotics for the next decade....although they will expire long before that.

Cast changes have continued. WN was away for 2 changes and her nurse assistants did wound dressings but no cleaning/debrieding. It was good to get her back last Thursday. Our regular CT was out too so we had the first CT that did Victoria's cast do a couple. He did a fine job, but the casts were larger than in the past.

I will post a picture of the wound today - in this post. The size is 5 x 5 x 1.6cm deep. There is also now two places on the wound where the skin has attached to the underlying and new tissue. This is VERY good. Where Victoria was missing 12-13 cubic cms of tissue before, she is down to 1-1.5 cubic cm. The wound is almost completely filled in. Now comes the hard part of getting it to heal over.

Her heel is forever deformed. The bone is higher and moved a little to the left. Special shoes and at least a cane will be necessary in the future.

The last x-ray was reviewed by a radiologist. The bone shows no further damage and it is showing signs of re-mineralization. The bone is healing. Great news.

We will not see DrIV#2 until the end of the month. So things are into the long grind of healing.

We received the bill for the first 9 weeks - $42k. We have not heard back from the provider on the care program we applied for.

The PICC has been removed. That is the semi-permanent tube and connection for the IV and blood draws. The removal was quick and painless - although Victoria said she could feel it coming out. 44 cm of tube - it reminded me of the commercial on the Sci-Fi channel where the guy was pulling a hair and unthreading his body...

Her inflamatory numbers were stable, no real change after 2 weeks of the orals.

Next update will be near the end of the month after the next blood work and x-ray.

5/21

1:45p

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.

5/20

1:45p

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.

5/19

11am

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!

Ok...so, we got there, very busy, in and out, no issues. BP in the low 130s. Temp normal.

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

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.

5/15

3:45p

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.

5/14

11am
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)

3:45p
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

5/13

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.

5/8
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.


5/9
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.

5/12
3:45pm
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.

5/7

This will be a difficult post.

3:30p
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.

Pray.

5/6

10am

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!)

3:45pm
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 PIC...no 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.

5/5

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 room....as 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).

3:30pm
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.

5/1

2:00pm
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.

4/30

A full month has passed. The most recent photo, from Monday, is here.

Some observations. We have met some great people, especially the IN staff and WN. CT has been equally great. The admin staff is polite and friendly, we seldom 'check in' as they see us coming and get us logged in with almost never a wait. We try to be on time for appointments and it is great that we seldom have much if any wait.

The doctors. Frankly people, you need to work better. DrPRI has recovered some from her earlier hysterics and the numbers from yesterday's blood tests will (HOPEFULLY) end them. DrIV is as cold as ice. We have only seen him twice and that was 3 times too many. DrIV#2, off to a good start.

I have not always been polite, and frankly, am a pretty forceful advocate for Victoria. In most cases, the result has been good. Last word before today's report card: WN is worth her weight in gold. The medical group that she works for owes her a debt a paycheck and gold watch can never, ever repay - and neither can we.

3:30pm
BugN appointment to go over the blood work up and prescriptions. We still have another 10-20 days of IV but we didn't discuss it much. Renewed the prescription for the oral antibiotics and suggested that the iron supplements may be having a negative impact. I didn't tell her, or Victoria til later, I stopped the iron when Victoria started having 'issues' (constipation). Here are the results of the blood work:

Comparisons are yesterday to 3/27 tests:
Creatinine 2.2, up from 2.6 (this measures kidney function and lower is better)
Hemoglobin 8.8 up from 8.2 (this is the anemia indicator, it is up from 7.1 on 4/1) GREAT!
Sed rate 93 down from 120 (an infection marker that is down, still high but trending)
CRProtein 26 down from 151 (the other infection marker, another good move down)

There are more than a dozen tests reported and all of them show improvements and positive trends.

The time with BugN was short and pleasant. Off to IN and IV

Got situated and started. Oh. BP is 142 and temp normal. 32 minutes later, all done and head for home. We were told that we get to sleep in over the weekend; Victoria's IV appointments were both moved back from 8am to 8:15am. Great huh!?!

4/29

3:45pm

Fear is realized. Victoria's PIC line has developed a minor blockage. IVs can still go in, but they can't get blood out. There is a chemical they can use to help unblock, but the cost is over $500 per dose and if Victoria is willing to be poked once a week, they will continue without drawing blood from the PIC.

For the moment, IVs are going in and they did today. Blood was drawn so we will see what the numbers are like tomorrow.

4/26-27, 4/28

4/26 8am
Yes, wonderful time to get up on a Saturday and be out and about. Got to WEC, got IV, temp and BP ok. In and out.

4/27 8am
Yuk. CJ hated getting up early and going to WEC and then to church. But, we got in, took a 10 minute nap each and got out. Staff was busy both days so there was little chit-chatting going on.

4/28 2pm
Arrived at ID on time and got in to see CT right away. WN's assistant #2 came in with the ultrasound debrieder. The wound looks very good and it is clear there has been more filling in. No way it is as deep as it was...but have to wait and see. I actually got my nose into the removed cast - OH MY GOD does it smell BAD. The fluid coming out was tinged with blood. This is a good thing (not just in my opinion) as it indicates there is more and more good tissue being exposed.

WN came in and smiled upon looking at the wound. She got to work right away. I had snapped a few pictures before she started. The wound is no longer 'round'. It has been oblong for a while, but the shape is definitely changing. 10 minutes of the ultrasound and she was done. I took some more pictures and then had to hurry out to get CJ. I was late, AND IT WAS SNOWING! Not a mix, not flurries, SNOW. Big ole hairy snowball sized wet flakes. CJ had forgotten her coat this morning...to say she was upset that I was almost 10 minutes late...well, she wasn't THAT upset!

Got back and both techs were there as one has been working on Victoria for several weeks and he was passing his insights on the other. Purple cast this time around. He was a little heavy around the arch but otherwise, a workable cast. We then went on to IN.

We got set up and talked about a bruise on Victoria's neck. Apparently the fall last week has left a mark. The bruise is about 6 inches long by 1.5" wide on the side of her neck. It is healing.

BP was 150 and temp ok. IV was smooth but we got there late and got out of there just before 5pm. Caught the rush 20 minutes but was home by 5:25p

PICTURES WILL BE POSTED TOMORROW.

4/25

Last night Victoria complained that the side of her foot hurt. She felt the bandaid that had been put on a spot of rubbing by the cast had come loose and moved, making a rubbing spot worse. As such, we said that if it persisted into the morning, we would go back to CT to have it redone.

8am
The cast still hurt. We have to go to the office this morning, but I said I would make an appointment with CT.

1pm
Arrived at ID for cast check/redo. CT was fine with the request and got started on it. I did not believe the bandaid moved - really not possible - but there is no way I am going to dismiss the issue. The possibility of something going wrong is too high and the consequences too serious.

The cast came off and the bandaid was exactly where it had been put. Still, we talked about some minor changes and the bandaid was removed and a smaller, more flat covering applied. The cast was redone and as we learn, things improve. This cast is lighter, more stable to Victoria's foot - making it work better - and less tall...preventing her hips from being uneven - a source of discomfort.

2pm
Moved from CT to IN. I had checked in earlier with IN and they were waiting for us with meds all ready. I still had to leave to pick up CJ, but Victoria was done by the time I got back.

Insulin: Victoria had 40 units yesterday and none so far today. At most I expect 30-50 units. Sugars have been in the 100s.

4/24

9am
Arrived at ID for cast change and got in pretty quick. CT cut the old cast off and we talked about Victoria's experience. It was a lot heavier and more difficult to walk in, but it did do what it was supposed to do - stop the posting.

The wound looked very good. WN came in and agreed. She then started cleaning out the wound. This was in response to the previous comments I made to her. It looked good and she added a new compound to the wound and packed it to the brim.

Quick in and out (20 minutes) and the new cast was started - color, black. CT modified it again to get it a little lighter. Still not perfect but by the time he was done, we were almost 2 hours late to IN.

10:45a
IN put us in a private room and we waited for the meds to arrive (they are called for only once we are actually in IN). BP still a little high and temp ok. Most of Victoria's heart rates are in the low 60s!

We got out around 11:30a and got some lunch before heading to the office for a potential client meeting. This was only the second time we used the wheelchair but it fits in all the office doors including the bathroom!

4/23

3pm
Arrived at ID for infusion and appointment with DrIV#2. First stop was X-ray. They wanted a new look at the bone for DrIV#2 to look at. I went in with Victoria. Sue and CJ were tagging along and waited in the waiting area.

X-ray Tech was very good but needed some advice on taking a picture through the cast. And given the extra thickness this cast has...that was some doin. Unfortunately, I don't think there was enough contrast to get a good idea what is going on. That said, we got the films and headed for DrIV#2.

We have never met DrIV#2 although we had heard nice things about him. We got to the check in right on time...and waited...and waited...and waited......past the time when Victoria was scheduled to get the IV. I went back up to the desk and got the ball rolling. Being a regular helps.

Off we went to the only private IV room. We got set up and Victoria's IV was started even before the dr came in. They even had time to change the PIC dressing (a weekly task).

Finally, he came in. Nice guy. Introduced himself, got comfy and asked how Victoria was feeling - in a way that suggested, he wanted to know. Discussed how the infection got this bad and the anemia. Sue added that she was concerned that the anemia was not caused by iron deficiency and therefore iron pills may not be useful. While we were waiting, I had one of the IN staff check on the results of yesterday's blood draw. Hemoglobin was 7.6. More improvement!

DrIV#2 asked about the surgeon and his recommendations. I offered them. Then he looked at some of the results of the blood tests and said something wonderful. He said he didn't know what was normal for Victoria so it was hard to tell how much improvement was going on, or could go on. YEA! He gets it!

Some more numbers: Sed rate. This is how much blood goops. I am not going into the details, not important. Enough to know that when a big infection is going on, this number can be very high. 4 blood tests ago, the number was 151. Today it was 38. This is very good. However, normal might be around 10. What is interesting is this number is UP from 33 last week. Now, BugN was all about the infection - this number is a good indicator of a bad infection and it was DOWN 80% last week! What the hell!? Another number deals with proteins in the blood and 4 tests ago, it was over 250. It is 101 today and down from 115 last week. Apparently this number should be nearer 50. So what was BugN going on about infection markers?? Victoria's numbers show dramatic improvement. Perfect? No. But certainly not something to poo-poo.

Oh...RA (arthritis Victoria has) can increase the protein markers too.

I told the doctor to expect dramatic improvement next week. Victoria's insulin has fallen through the floor. I know I suggested it before, but there is no doubt it has over the last 48 hours. Over the weekend and Monday, Victoria's sugar numbers have been going the wrong way. As a diabetic eats, the sugar levels increase and require insulin to control. Victoria has had low numbers and after eating and no insulin, they have been going DOWN further. Yesterday she got 55 units, all in the evening. This is more than 100 units less than her normal dose. Today, so far, she has had 15 units and she has not moved out of the 100's (very good).

With lower insulin doses and better sugars, Victoria's healing with accelerate (hopefully, knock on wood).

DrIV#2 really wanted to see the X-ray from 3 weeks ago, but they couldn't pull it out of anywhere. That said, he wants to look at it and see Victoria in 2 weeks. He would also like to see the wound when it is open. We will see if it is possible during cast work tomorrow.

We both like him. Sue agrees.

4/22

Morning:

DrPRI's office called. She is concerned by the low blood count.... (are you rolling your eyes...again?!)

"Yeeessssss..." said I.

"The doctor wants to try and find out where Victoria is bleeding. You said she was not bleeding from the heel wound..."

"Said? There have been more than a dozen cast changes, a surgeon has looked at the OPEN wound and THERE IS NO BLEEDING OUT."

"Yes, well, the doctor wants to try and figure out where she is bleeding from...."

"She ISN'T bleeding from ANYWHERE!"

"Well, her blood count is low.."

"Yes, because **** Medical gave her a drug that CAUSED the anemia to get worse, but as I am sure the numbers you have indicate, she is recovering from that mistake."

"Yes, but the doctor..."

Wants a colonoscopy. No thanks....did that 2 years ago....the likelihood of a big change occurring since then is pretty small as there are NO risk factors. AND....there is no indication in her stools of anything wrong there.

I ended the conversation. And, another nurse called 2 hours later, saying that DrPRI still wanted the test done. I said no and hung up.

3:45pm
Arrived at ID for the IV at IN. (sheesssh). Got the weekly blood draw done so that DrPRI can have another hysterical afternoon tomorrow..... Otherwise, easy afternoon.

PICTURES have been updated view at your own risk!

4/21

2pm
Cast change. Got in and set up. CT got the old cast off and we talked about changes to the cast to improve things. He has an idea for a change and we agreed. He is going to add the little ridge further back on the heel. I think this is a good idea.

WN came in with her ultrasonic toy. Her assistant is....well.....I need to come up with a blog name for her. I told her I was trying to think of one but she didn't offer a suggestion. WNA doesn't seem right. AWN doesn't work either. Will have to give it some serious thought.

WN got to work. Victoria had to talk to the Court during the session. Everyone was quiet, but kept working on Victoria's foot during the call!

After the debrieding, WN measured the wound. It was clearly smaller but....da da...

5.1 x 4.7 x 2.4

It is clearly improving. I haven't posted last weeks photos' and now I have today's too. I will get them up in the next day.

After she was done, we talked about BugN and the infection. She agreed with BugN but understood our position. We talked on several things and we kept her well past the time she should have spent with us. She was great.

She left and CT started on the new cast. The ridge was replaced with a lip. That is the only way to describe the 1/2" tall x 1/4" thick by full width 'lip'. After it dried and Victoria tried walking, it was clear it wasn't going to work as well as planned. he added another 1/2 under the toes and that worked better. But the cast no looks like those platforms Chinese wear?

I am concerned for the hip displacement caused by the height addition. We will see. He had to trim some of the lip off to get it balanced, but Victoria said it is ok.

We were more than two hours in the cast room and were very late to IN for the IV. Once in IN, Victoria said she wanted one of the recliners - normally she takes the IV while still in the wheelchair we use there. Not today. Comfortable chair for her. IV went well. Blood pressure still elevated. We will try an experiment on that this week. Temp ok.

We left at about 5:20 and picked up CJ from Sues. Hot dogs was the choice for dinner, so after getting Victoria settled at home, CJ and I went shopping.

Anyone know where we can get Big Johns beans?

4/18, 4/19 and 4/20

sorry about the delay.

Friday: Victoria fell again overnight. It was very hard to get her up and her neck was seriously stressed. This is the second time this week and we need to address the issues causing it.

3:45pm
IV went well. No issues.

Saturday, 9am
IV at WEC. Talked to IN about the falls and BugN's pronouncements. No issues. I went to Milwaukee and met someone selling a wheelchair. The price was good and it is a sturdy, wide model. AND, it fit in the trunk perfectly! Just need a cushion for it. But Victoria tried it and it works great and she likes it!!

Sunday
Victoria slipped off her recliner overnight. This is the third 'fall' in the last 5 days. I would say we are getting better at getting her back up, but it still took almost an hour and she still stressed joints. This is NOT something we want to get better at.

9am
IV at WEC. Then off to church and Victoria's first use of the new chair. Worked fine.

1pm
Our good friend Nene offered a lifting recliner to us. Which we gratefully accepted. She and a friend delivered it today. After some re-arranging of the living room, we got it in and set up. This will make it much easier for her to get out of the chair overnight to go to the bathroom without the risk of falling.

THANK YOU NENE! It is working great.

4/17

1:40pm

Odd time for cast change. Victoria did a shower last night with the cast on, we did lots of things to try and keep it dry, with less than 100% success. Still. The cast is leaking like a sieve. Fluid is seeping out and into the slipper.

CT took off the cast and got it ready for WN. She came in and we discussed the issue. One option is to switch back to 3 changes a week. Victoria's foot was white and wrinkled. The bottom of her foot had been damp for too long. Her foot is also peeling. This happened with the toe ulcer too, but the area is much larger. WN removed the excess peeling skin. It is similar to a sunburn peel.

The fluid seeping is likely caused by the amount of fluid that is in Victoria's legs. I have been trying to get her to keep her feet up as much as possible but she refuses. By this time on the toe ulcer, her ankles were showing. There has been NO change in the amount of fluid in her legs since this started. It is clear that the fluid is finding it's way out the heel wound. This is NOT GOOD for tissue healing. Victoria is also getting weaker in her legs. I think the two are related.

WN said she would try a few different things to see if it helps reduce the fluid seepage or at least protects Victoria's foot from too much moisture. We will have to see. She added new ointments to the wound and packed it extra. Cast is blue!!!

We were out just before 3 and headed for IN.

We got set up in a separate room than the general area. No biggie. Blood pressure still a little high and temp ok. IN went to wait for the IV fluid. After 20 minutes, I went looking for them. Apparently, the IV got lost and they forgot about us. She brought the IV a little later and got us started...40 minutes after we got there. Everything went ok and we were out by 4:25p

Another weekend coming.

4/16

1:40pm
Appointment with BugN. She started off with a little expose on the state of Victoria's condition with this little goodie: the bone infection is persisting. Really? What infection? Well, the one that is visible from the X-ray. I asked about the culture of the bone? She said that doesn't always show an infection.

(So, understand. She gets a chunk of bone and finds no infection but she LOOKS at a picture of the bone and proclaims it infected. Does ANYONE think this makes sense?)

She looked at both of us and asked: "Is this something new?" Ah, yea. We were informed there was NO infection in the bone. She returned to the X-ray and I stopped her. I said shouldn't a culture determine if there is an infection? I said I had no issue with the course of antibiotics daily for such an infection as I think having a 4" hole in the foot is just BEGGING for an infection and antibiotics help prevent such, but to claim a picture indicates an infection but a culture is inconclusive just stunned us.

So, she says: the bone shows infection and therefore there is, ok? NO was my response. No, I don't see how a picture can show infection that a culture doesn't. She then brought up that because Victoria had been on antibiotics, there would be no infection in the cultures. Sorry, but if there is no infection in the cultures HOW IS THERE AN INFECTION???

The meeting went DOWNHILL from there. She continued to insist on the infection. I continued to insist that we were going to continue with the antibiotics, but that her position was not defensible. We then talked about the anemia. Sue (Victoria's friend and retired doctor) was with us. She asked a question about the antibiotics and opened up a line of thought. I asked if BugN had access to the blood tests taken so far. She did. Victoria's blood count was 8.2 on the first blood tests. The tests taken 6 days after being on the antibiotics showed a drop to 7.1. This was the test that got DrPRI all riled up. The question became, did the antibiotics cause the drop? I am researching this. BugN didn't think so, but it was clear that the first batch of antibiotics she was one was doing damage. The latest test (blood drawn Tuesday) showed the blood back up to 7.5. This is a good improvement.

The conversation on the anemia went no where with BugN. It is outside her range of responsibilities. She left after giving us another item. Our appointment next week with her department is with someone we have never met. She said we would like him but that he wants a fresh X-ray...obviously to see if there IS STILL SOME INFECTION.....

From there we went to IN for the IV. It was a nice, pleasant visit with the staff and we left to drop Sue home.

4/15

3:15pm
Arrived early for our appointment. Plan for today is to redo the dressing around the PIC line, take blood and do the IV. All done nicely and quickly and professionally by the IN staff. Kewl ladies.

Victoria fell today. It was pretty early this morning and although she is going to be a little bruised, she is apparently not permanently damaged. It took us a couple of tries to get her back on a seat as the cast makes it difficult to get a foot under her.

4/14

8:00am
Arrived at ID for cast change. Got in about 8:20a. Cast came off and we saw staining of the slipper under the cast again. This is a little disturbing but...

Wound looks good. I will post 2 pictures from this morning later tonight or early tomorrow. The wound has shrunk by about .1 cm in width and .2 cm in depth. This is a good thing. WN liked the appearance and condition of the wound. WN had her trusty new ultrasonic debrieder and went to work. After 10 minutes, she added a new enzyme to the wound that would continue working on dead tissue and help promote tissue growth. Once packed, off she went.

We discussed the cast with CT and decided that less was better and the bottom of the cast would be flatter than the last one. It is obvious that Victoria is 'posting'. This means that she is actually standing, in the cast, on the heel. Instead of her weight being evenly distributed over the foot, her foot is actually toes up. So, by having a flatter cast, she might post less. When he was working on the toes, I had him make sure that all the toes were visible from above so that I could have access to them. When the cast came off, I actually trimmed Victoria's nails.

When the cast was set, Victoria stood up...and posted on the heel. He took a pen and taped it to the bottom of the cast and immediately, Victoria stood flat footed in the cast, YEA!

He added a ridge to the bottom of the cast and she has been walking with a much more natural, and flat gait all day - not that she is walking a lot, but it is obvious she is not posting at all.

10:15a
We made and kept an appointment with DrPRI. Never have I seen a doctor back-peddle as much as she did. "You are the boss" "I am only a consultant".....it was amazing and probably the closest thing a doctor ever offered as an apology. We talked about crit and other issues for about 20 minutes. No med changes, but cholestraol and A1C tests are now permanently logged for regular checks. I want to see if the A1C shows improvement. A1C measures Victoria's blood sugars over a long period. If the change we made before Christmas with how we do insulin has improved things, it will show up in the A1C.

After all the blood draws, there has been no cholestral tests. So there will be with the next blood test. Her blood pressure was a little high, but we are not going to make any changes right now.

DrPRI redeemed herself this morning.

3:45p
Back at ID for infusion. Everything fine, planned on blood draw and dressing change tomorrow. BugN is scheduled for Wednesday.

4/13

8:30am

Arrived at WEC. Got set up and the nurse sat down to have a talk with us. DrIV wants Victoria to see DrPri. Yes, the ole end around. Further, they were going to draw blood today so that the test results would be available for our 'appointment'.

The IV went fine, we told the nurse of our issues with DrPri and the blood was drawn. BP and temp both fine. We were out and on our way to church by 9:20. Picked up some eats along the way.

12:00pm
Back home after church. Will work on Victoria's toes today. Big changes in the cast tomorrow.

4/12

8:30a
Arrived at WEC. Got set up and going. Blood pressure good. There was a problem the last couple of days with it really high. Going to manual had a big difference. Not sure what to make of it.

Temp ok and IV done quickly. There is definitely something wrong with the way the cast is. Victoria is constantly on her heel. And there is leakage from the cast again.

4/11

3:15pm

All day at office then to ID for IV. Arrived and got set up. Today is dressing change. The PIC needs to have all the various components - except the PIC itself, replaced and cleaned. So, while that was going on by IN, the IV dripped. Meds were changed. Victoria was getting 500mg of whatever antibiotic, now she is up to 1000mg (1g). Based on her tests of Wednesday, her liver and kidney functions are fine, so they upped the dose on the antibiotic. Relating to the previous post of Tuesday where BugN was concerned there were still too many infection markers.

Our schedule for the weekend has changed, we get to sleep in...an extra half hour. We were out by 4:30 and with picked up Lizann - Victoria's sister - for dinner. Her birthday is Monday and we took her out for ribs.

DrPri office called this morning asking if Victoria would come in to see her. I told the nurse we were very unhappy with DrPri right now, but that we would talk about it. We have, but not yet come to a decision.

4/10

8am

Arrived early at ID for cast change and wound work. CT came out and got us and we went in to the room. When he took off the 'slipper', it was obvious there had been a lot of seepage from the cast. The slipper is a rubber sole with 3 straps: one around the back of the heel, one over the top of the toe joints and one that goes over the ankle. As bad as the inside bottom of the slipper looked, there was NO indication there had been any leakage from the cast???

He took it off and there didn't appear to be any stains in the batting under the foot. Odd. Shortly thereafter, WN came in. First was an appreciative smile. She liked the way it looked. She too thought the stain in the slipper was odd given the lack of such on the cast.

She informed us that the new fangled ultrasonic debrieder was broken and unavailable. So, into the wound she dived. Using scalpel and surgical scissors she cleaned up the area around the wound removing all the dead and calloused skin. When she was done, she used some gauze and 'cleaned out the wound opening. Then, with a 'scrapper' she began removing the soft tissue from inside the wound. The goal is to get to healthy tissue. Which means, bleeding. Scrapping the tissue areas and the bone of as much dead stuff as possible took a little while. But when she was done, the entire wound looked better - if you can call a gaping hole in the body better.

She then measured. 5.4 x 5.1 x 2.4. There is definite improvement. Victoria complained that her big toe was irritated yesterday and we brought it up again today with WN. She looked between the toes and proclaimed: athletes' foot. Between the big toe and second toe. We talked about treatments and methods, along with casting issues. I don't like the toes being so buried in the cast - obviously a problem - and both CT and WN like the protection to the toes it offers. There wasn't much compromise and the new cast extended to the tips of the toes. There is gauze between the toes right now, but I will remove it and use Q-Tips and some powder to treat the condition/infection. I don't like that I can't even see her little toe. After the cast was on, I complained about the lack of access to the last three toes and CT removed a sliver of cast to give me better access. He removed about 1.5" at the side, tapered to the middle toe. It is still not enough and next cast will leave more of the toes exposed. Their concern is that she will stub her toes, but given the limited amount of walking and where she does walk, the danger is minimal.

We left and went home. There I noticed that Victoria is not walking on the whole slipper. Her toes are in the air which means her heel is supporting all the weight. Not good. We tried a few different ways of doing things but it is persisting.

3:45pm
We arrived back at ID for IV. I asked if the IN could call down to CT and see if we could talk about the cast. CT came down while we were waiting for the IV meds to arrive. They are not ready, prepared, until we arrive and are in IN.

CT came down and we talked. He actually was pretty defensive but we agreed that if the issue persists, we will get some cast adjustments done before the weekend. I don't want her to be walking mostly on the heel all weekend.

No IV issues today. We were done in 30 minutes and got ready to go. Although we don't know the exact numbers, IN told us that both blood and kidney numbers had improved on the last blood draw. They were not great, but definitely moving in the right direction (blood 7.3).

They were definitely frazzled there today - no blood pressure or temperature taken!

Home bound we went into the pouring rain.

4/9

Another 'easy' day. Only the IV to worry about. Got there at 3:40 and checked in. The area was busy today and the staff was dealing with 4 patients (two nurses). They got Victoria started and we talked about blood draws. The original plan was to do them on Tuesday so that results would be back before the weekend.

The decision was made to get them done today as they were not done yesterday. While we relaxed with the IV flowing, the staff worked on others. After about 20 minutes (it takes about 30 for the IV), Victoria moved the IV pump so that I could see how much longer. It said she had gotten only about 5% of her dose. I looked at the numbers and saw right away that the rate was wrong. It is supposed to be 220ml, it was set at 22ml. I called one of the nurses over and got it set right. So, we settled in for another 25 minutes.

After the IV was done, they drew the blood and finished up. We left just at 5pm.

Tomorrow, cast change and cleaning and debrieding.

Bill #2

We received the bill from the hospital for putting in the PIC. That is the tube that is semi-permanently attached to Victoria to allow IVs and blood draws without new holes.

$1,947

4/8

Court today, went to office to meet with clients then court. Too much walking for Victoria. Finished and went home, getting lunch along the way.

Got to ID and had IV done. No issues. Staff noticed we were very quiet. The trial outcome was unexpected - not bad, we won...but not as expected.

Victoria's legs were very tired upon getting home.

We haven't talked about blood pressure and temps. Victoria gets fluctuating temperatures. Late afternoon it is not unusual to be near 100. By the time dinner is over, it is back to something normal. So when the drs and nurses ask if she has been experiencing sweats or temperatures, the answer is yes, but. Except the one day it was 102, she has been pretty consistently under 100. Morning temps have been in the 97 range.

Blood pressure and Victoria. If she is compliant with her meds, her pressure is just a little high (mid 130's over 70s). When she is not, it can be all over the place, high 180s not unreasonable.

She has been very compliant the last 2 weeks and most of the BP readings have been good. But Monday it was very high (188/77) and it was only marginally improved today (176/74). Not sure why.

Her sugar levels have been stable in the 100s (high 180-190s during the day, low 100's in the morning) After the 35, I have been a little gun shy about being agressive.

Long day and both are tired.

4/7

Up at the crack of dawn, Victoria woke early and headed for the bathroom, which woke the dogs, which started whining about getting out for their bathroom break. So, I got up, and so did CJ and so, 15 minutes before we had to be, we were all up. Joy.

8am
Off to drop of CJ and onward to ID. Arrived and checked in. Different cast tech than CT, but we have heard a lot about him and feel comfortable. Nice chat while he removed the cast. He called WN to let her know we were ready. The wound looked ..ok... there was little overspill - fluids in the padding around the wound. It was very...juicy thou. WN came in and decided a measurement was in order. 5.7 x 5cm x 2.7cm deep. It is a little deeper, but smaller in circumference than 10 days ago - fractionally. After a little cleaning, she packed and a new cast was put on - red again!

Out we went. A little court, a little office and we were home by 12:30.

3:40pm.
Arrived for IV at ID and our appointment with the person in charge of the infection. She works with DrIV and WN, but is more focused on the actual infection. She is a little concerned because the 'markers' for infection persist. Although Victoria is not showing any signs of any infection....you know, other that the big hole in her foot. I will call her BugN.

Liver function has returned to 'normal'. Kidneys have returned to 'normal - 2.7'. Blood is still very anemic, 7.1. Continue as we are, see ya in 2 weeks. DrIV will see us next week and they will alternate.

IV was run and we were out by 4:40. I got Victoria home and went out to fetch some dinner. DrPri called (well, the staff did). She wanted Victoria to go to the hospital to be admitted and evaluated. She said she is very anemic, that her kidneys and liver were not working and that she wanted her in the hospital.

"Ah, no. We were seen by WN this morning, BugN this afternoon and we have been getting IVs for the last 11 days. What exactly did DrPri think the hospital - besides charging us 2k a night - was going to tell us???" Kidneys and liver are back to normal and we are using iron supplements to help boost the blood.

The nurse asked: you are being seen every day? DUH. Are we going to have another fiasco like last week? Tell DrPri, we are not going to the hospital. I hung up.

I think I will ask the provider for a price list.....

4/6

That alarm this morning was very impolite.

We got up and drove out to WEC. No issues with the IV. Nursing staff is polite and professional in the IV department.

We were done and out of there at 8:40.

On Thursday another man was in IV. His arm was very dusky and swollen. He wore a walking cast and his other arm was mottled. We watched as staff tried to get another line in and tried to be less invasive. Kinda hard to do in a 10 x 20' room full of chairs for IVs.

We saw him again yesterday, obviously on his way into WEC for his daily IV. This morning, we talked for a few minutes. He had an infection in the toe and lost part of the bone. He was healing, but also had a PIC put in for daily IV antibiotics. On Thursday a clot formed near the PIC line and it was a close thing. This was something we were not aware of possibly happening.

He was doing a larger percentage of his medical stuff at home and that might have had some impact, but it was clear he was more interested in coming in every day into the future to prevent such a problem recurring. He was 3 weeks into treatment. We are just passing 1.

Did I post this? We are looking for a wide wheelchair. The Wheelchair Recycling place does not have one and the cost of new is prohibitive. Renting is over $250 a month. Let me know if you know of one out there.

Bill #1

In yesterdays mail we received one of the first bills:

DrPri is $151 per visit
WN is $233 per visit
IV (including the staff cost:

• $373 for the first one 3/27
• $629.50 for 3/29 & 3/30
• $283.63 for 3/31

DrIV is $235 per visit
DrPod is $223 per visit
Cast is $458 per application

Included in this bill was the blood draw for 3/27, the first one done. It included 2 cultures and a couple of other items. $432 for the draw and tests.

Bill for 3/25-3/31 $4,277.63

So, this will be roughly, our weekly cost.

4/5

8am: arrived at WEC and got the IV going. Nurse cleaned Victoria's arm and replaced all the components of the PIC line. (PIC line is a tube inserted into the body so that each new injection or blood draw does not require a new needle hole). The new antibiotics went in and then we went out.

Both of us are tired.

x-rays

This is the x-ray taken 3/26 when we first went to ID and wound care. The heel bone has a slight bright spot and ragged spot on the bottom. This is the wound area and source of bone infection.









This is the x-ray taken on 5/5. The angle is a little different and you can actually see me taking a picture in the background. However, you can also see the bone is considerably less well defined. It has collapsed a little (not as much as I first thought. and the wispyness is a false image of reflected x-rays. The damage area is almost 5 times larger.

4/4

Early call for cast change and debriedment.

Arrived at ID at 8am. Went to ortho for the cast change and for WN to come in and clean and inspect. We had worked out a plan to have some blood drawn at the same time so after Victoria was set and the cast was being removed, I went and told the IV staff we were ready. By the time I got back, the assistant to WN was wheeling in a new toy. An ultrasonic debrieder. The cast off, I took a few pictures. There are two pictures in this post. PLEASE, if you have a weak stomach, DON'T go look. The IV nurse came in and we chatted as she drew blood. WN came in and got all set up and fired away. The ultrasonic used saline and sound to clear away most of the light brown tissue from the wound.. After she was done, she packed the heel and a new cast was put on. CJ has been picking the colors: first one was purple, then black, today's was red.

We were out of there by 10am. We went to a local medical supply place to check into wheel chairs. $250 a month rental, almost 2k to buy. We have our name on a list for a wide chair at the recycling place but they don't get them often. We went to lunch and home. I did some office things and picked up CJ from school. She is spending the weekend at a friends.

I got a call about 7pm. The IV staff called to let us know some changes. First, the antibiotics are screwing with Victoria's liver. That is a big no-no. Kidneys, bad, liver, dangerous. So, they are changing the type and we are going back on daily IV, but we are also getting an antibiotic for aggressive skin infections that she will take twice a day orally. I got this message when I was on the way to Walmart to pick up Victoria's test strips for her sugar test machine. Lucky I didn't have to make two trips, but the meds were there waiting. No infection in the bone is a great thing, but infection, with a wound this size, is right around the corner at every move. Antibiotics are going to be a daily thing for the next year.

Early call in the morning...damn, two mornings we COULD sleep in but we need to be at WEC at 8am both Saturday and Sunday.

Also, need to name the tech that does the cast. Super nice guy. CT = cast tech.

4/3

Victoria had a good night (she stole the rest of my iced oatmeal cookies during the night!).

We had a long day at the office planned. The first one in 2 weeks. Clients, new client to be seen.

We picked up CJ and went to get her IV done. No issues. IV went fine and we rescheduled the next couple of infusions (the original schedule of every day has been modified to every other day). We talked about having blood drawn again. Victoria has an appointment with casting and WN in the morning and blood will be drawn then. This will give us 3 days of iron supplements and 5 days of multivitamens (with iron and zinc kickers). With the IV done and the schedule for the next 3 days set, off we went.

There were no calls by DrPri today. Maybe she threw her hands up.

Update from 4/2. WN confirmed there was NO INFECTION in the bone fragment!!!! This is GREAT news. Of course, it means the problem with the bone was caused by Victoria walking on it for the last 3 months. But no bone infection means we have less long term worries. It can still get infected, but the general infection appears to be under control right now. The rebuilding can begin.

We got home by 5 and had dinner. Cast change tomorrow.

4/2

First up this morning, 8:20 at ID, orthopedics to remove cast and have WN check progress. The tech got the cast off and surprisingly the leg sores looked better. Her heel was goopy and the packing shows the depth of the wound to be about 1.5", from side to side and from the back of the heel to the beginning of the arch. I will take a picture of it next chance so we can see progress. The wound actually looked good (though I am sure anyone else looking at the gaping, dripping hole would differ with that assessment.

WN came in and she visibly brightened upon looking at the wound. It hasn't gotten worse, which is an improvement. She seemed more positive about the future. She packed the wound and dressed it. We scheduled coming back for a new cast after we see the surgeon about 1pm....more after that.

Continuing:

1:15pm
Arrived a little late because I went to the wrong place. Still, we got in and after filling out another 'intake' sheet, got settled in an exam room. The nurse took off the dressing put on by WN earlier. It was bloody. Not terrible, but it was obvious that Victoria had done some stepping on the foot without a cast. It sat there dripping while we waited for DrSur. He walked in and introduced himself.

He got down on all fours and peered at the wound for more than 5 minutes. He then sat down and offered the following:

1. Amputate mid-calf. 70% chance of healing but it might be much lower chance if the tissue of her leg is not completely healthy - and he acknowledged from his inspection, it was problematic.

2. Amputate a chunk of her heal and extend a tendon in the back of her leg over the opening - IF she can be in a rehab facility for 3-5 months and not walk on the foot AT ALL during that time, 50% chance of it healing.

3. Keep doing what we are doing and there is a 15-20% chance of getting it healed.

#3 is 3 times greater chance of success than I had given it, so that is great!

We thanked him for his time and the speed at which he saw us (getting an appointment in 2 days was wonderful). We left and picked up CJ before heading back to ID and casting and IV antibiotics.

We tried to get her IV antibiotics and they wouldn't do it because her kidneys are having a hard time with them and they want to switch to every other day. By the time we had talked about the issue with DrIV and WN and the infusion staff, we were scheduled in Casting. The issue with the kidneys is a problem. Victoria only has about 25% kidney function anyway and anything that makes that worse is BAD. But, there was another issue: While we were in with DrSur, the phone rang twice. I ignored it, but checked in when we left to go get CJ. DrPri's nurse had called and asked for an IMMEDIATE call back. Which, we did. Apparently, the blood test on Tuesday scared the piss out of her. DrPri said Victoria had to go to the hospital immediately because she was acutely bleeding.

Now, remember. This is based on a blood test taken about 24 hours earlier. On this day, we have had WN go over the wound, a surgeon look at Victoria, and the ID staff including DrIV visit with Victoria, someone might have noticed any pooling of blood., somewhere. We declined to run to the ER, but then Victoria agreed to go to the ER to be evaluated. We finished the casting but DrPri called to say that the hospital staff were ready for us and a room was ready. HUH? I asked Victoria if she had agreed to be admitted to the hospital. She said no. I called DrPri back and left a message to call.

We decided to go to the hospital for the evaluation, maybe a transfusion. (The blood test showed very low red blood cell count - 7.1 when 10-12 is normal, Victoria's normal is around 8) When we got to the hospital, they wanted to admit her to do the evaluation. DrPri called when we were at a room reserved for Victoria. I was pissed. I said Victoria NEVER gave agreement or permission to be admitted. She wanted to talk to Victoria, Victoria didn't take the phone but did tell her that she had not agreed to admittance. She said she would call the ER to see if they would evaluate and transfuse Victoria. I hung up. We started to leave the floor and the nursing staff stopped us, asked us to wait while they called the Admitting Dr. After a 5 minute call, head nurse? said that Victoria had to be admitted. We said no, give her a transfusion and evaluate in ER. It was a scene at the nurses station and CJ was upset we were making one. But I was firm. No admittance. If they would see us in the ER, fine. They said no so we left the hospital.

Victoria is on multivitamins and extra iron supplements. Her color is fine, no stool or bladder issues. There are no unaccounted for bruises ANYWHERE - I checked. Except where the PIC was installed and that bruise is healing fine. She is actually more alert than usual this week. (No big naps and when she does take one, she is lucid and clear of where she is and what is going on after waking.)

The day started good, finished bad. We discussed whether we could keep DrPri. She has overreacted and has not listened to us. We have been clear, there would be no admissions to a hospital for virtually any reason. If Victoria and I decide that is appropriate, fine. Or if something substantial happens and Victoria is unable to decide, I have her Medical Power of Attorney. But 'acute bleeding' is hysteria. And 'admitting' Victoria without her consent....may have been a final straw.

We will see what happens tomorrow.

4/1

Easy day, IV was done at 3:45pm and we were home by 5.

Walking with the cast has been hard but Victoria is doing well with it. Checked the toes to make sure nothing is odd (still have circulation, no bruising or darkening)

Sugars are all over the place. I gave her no insulin yesterday and she never moved about 110 (after the 35 early Monday morning).

3/31

Monday 3/31 am
Victoria took shower, debried, cleaned and dressed wound.

9:45 am
Arrived ID for appointment with Dr of podiatry (DrPod). He looked, did a little debrieding, dressed the wound with a silver infused pad. Gave us a prescription for more pads. Talked about wet/dry dressings. Left about 11am

1:15 pm
Returned to ID for appoint with Dr(supervising the IV - DrIV) and Wound Nurse (WN). She undressed the wound and began aggressively cutting away tissue. She cut away a piece of bone in the foot for a culture. DrIV joined came in and looked. He dug around with his finger and said the joint was impacted and only surgical intervention would work. He recommended a Surgical Dr (DrSur) at different Hospital with WN’s concurrence. He left to attempt to get an appointment. I complained about the dressing on Friday and that no one seemed to be willing to get into the wound. It had been a week since we first came and only TODAY did someone actually do something with the wound - even though DrPod and WN acted completely opposite. WN complained of the dressing, the lack of debrieding and the first nurse that opened the dressing for WN complained that the compression dressing (done by DrPod) was done badly and wrong. I said that if no one was going to take ownership, we may as well try somewhere else. If people were going to sit back and say, too bad, foot has got to go and be unwilling to get in and try to save the heel, please, get out. I don’t want to deal with them. Give me someone that is going to try their damnest - and I will do everything within my power to help - or get out.

DrIV returned and WN and he suggested a full contact cast. This would limit everyone’s ability to treat the wound daily, but the damage being caused by Victoria’s walking - even as limited as it has become - would prevent any healing. We were sent to casting. WN and we agreed to 36 hours. Wednesday morning the cast would come off and we would see if the time off the heel helps. An appointment with the DrSur was scheduled for 1:15pm Wednesday.

After casting the foot, Victoria got her IV antibiotics. We left at 5pm.

3/29 and 3/30

Saturday 3/29 am
Cleaned and dressed wound; arrived at clinic approx 9am IV antibiotics administered, left at 9:45am

Sunday 3/30 am
Arrived at clinic approx 9am, IV antibiotics administered - noticed significant bruising around PIC site. Left at 9:30am. Arrived home, debried, cleaned and dressed wound.

3/28

Friday 3/28 approx 2pm
Arrived ID for IV antibiotics. Numerous attempts to get IV in failed. Temp 102. PA was called for. PA viewed wound, nurse cleaned around wound, used squirt bottle to flush out wound. Told to go to Hospital for PIC install and IV, wound dressed AND A SOCK PUT ON. Sock pushed dressing off the wound to the rear of heel.

Approx 4pm
Arrived at Hospital. Taken to Imaging, PIC installed. Sent to Surgery & Procedures, IV administered. Left approx 7:15pm

Approx 7:45pm
Arrived home, removed sock; dressing had completely come off wound area. Cleaned, removed tissue stuck to sock, cleaned and dressed wound.

3/27

Thursday 3/27 approx 6:30am
Victoria got up to go to bathroom, foot was dressed but a significant amount of fluid (mostly blood) was seeping; this was the first time any fluids or bleeding came through a dressing. Changed dressing.

Approx 10am
Arrived for appt with Wound Care. Nurse looked at wound, measured and said she was calling Infectious Disease(ID). Dressed wound. ID requested we come as soon as possible. We obtained appt at 1pm

Approx 1pm
Arrived at ID. Seen by PA, several nurses. PA took culture, ordered blood and IV antibiotics. Scheduled IV antibiotics daily for 6 weeks. Seen by Wound Nurse, specialist in wound care; she measured, then wound was dressed and a specialized shoe was provided to remove pressure from wound area. Taken off oral antibiotics. Left at approx 5 pm.

Victoria’s foot was slipping in shoe badly, distending her ankle. Stopped using once home. Debried, cleaned and dressed wound - significant fluid in old dressing.

3/26

Wednesday 3/26 approx 10am

Arrived at DR office for appt with primary Dr. She measured wound, ordered X-Ray and had us scheduled for Podiatry on Monday 3/31 and to be seen by Wound Care on Thursday am; nurse dressed wound; left approx 11am;

In the evening, I cleaned and dressed wound

It began small

and grew.

For those with no experience concerning diabetic foot uclers, they look terrible. Well, more than look, they ARE terrible. It takes no time for a small infected scratch to turn into a nightmare. 12 to 36 hours can turn a 1/2 scratch into a wound 3 inches in diameter, an inch deep. Ten CUBIC inches of tissue can die and turn into a foul smelling hole with death on it's lips overnight. This is our third bout. And it looks like we are not going to dodge the bullet this time.

We have no insurance. Our income is just middle class, but it will fail to cover the costs we are going to incur. If we can survive this, it is going to cost tens of thousands. If we don't, $100,000 is possible, even likely.

So, let's start with the history:

Wound start approximately Dec 15, 2007 with small tear of dry skin from bottom of heel. Found pine needle in wound approx 2 days later, wound then about 2" in diameter, in skin only. Kept clean and dressed with antibiotic ointment and dressings. Approx 1 month infection flared and wound grew to approx 4" in diameter - no bleeding, puss, bad smell, no softness in wound. Continued with cleaning, debrieding of callous around edge of wound. Minimal bleeding when removing hard tissue around edge of wound during this time. Traveled on 3/19 and I got sick (stomach flu), dressing changed only 3 times in 5 days. Dressing changed am on 3/24.

Tuesday 3/25 approx 6pm
Change of dressing found softness and small hole in wound. Using cotton swab, attempted to clean hole and determine size - large...size of grape at least. Dressed wound and left for emergency medical services (EMs)

Arrived at EMs approx 7pm, timely seen by Dr. He measured wound, added a dressing and prescribed oral antibiotics with instructions to see primary physician next day. Left at 8:10pm. Ran to Walmart to pick up antibiotic. Pharmacy closes at 8:30p. Got there in time and our Pharmacist had seen the faxed order and gotten it ready.

Pictures

Pictures are from first to latest. Scroll down to watch the progression.



This is a picture of Victoria's foot on 3/15, about 10 days before we headed to the ER. The black in the right center is a large scab. The pink around the edge is good tissue trying to grow and heal. The area around 10 o'clock is where the tissue got soft (the internal infection started).









This is 4/4. The 'thing' inside around 8 o'clock is the heel bone. Yes, it is very exposed. Most of the yellowish tissue is dead and was removed today by the debrieding machine and WN's work. If you want to figure the damage, the wound is about 4" in diameter and about 1.5" deep, roughly 19 cubic inches of tissue is gone. This is 6 times larger than her previous ulcer and of course, the bone is fully exposed here.



This is the heel on 4/14. The notch at about 11 o'clock is where the width is measured. The black around the outside is 'scab'. Dead surface tissue. The very red ring is area of new tissue growth. Most of the yellowish tissue inside the wound was removed by debrieding.









This is 4/21. The notch at 11 o'clock has all but been filled in. The darkness in the wound at 7 o'clock is leftover ointment that is used to promote tissue growth. You can see there is considerably less yellowish tissue inside the wound. WN removed a lot of the dark dead tissue from around the wound after this picture was taken. If you look at the wound on 4/4 and see the dark rim near 1 o'clock, you can see the change in where the opening is in comparison. There is almost 1/4" of good, healthy tissue between the current opening and the edge of that dark rim.

Latest look, 4/28. This is AFTER the cleaning with the ultrasonic debrieder. There is a noticeable 'lip' on the wound at this point (the skin on the surface is closing faster than the tissue is filling in. Although the overall size has changed only slightly, the depth is considerably improved; it is 1.9cm deep (2.4 was the previous reading). If it looks cleaner to you, it is. Both the internal and external surfaces are getting to be JUST healthy tissue. The 'bloodiness' is a good sign that the tissue is growing and blood flow (a crucial issue) is growing with it. Also, notice the shape has changed from mostly round, to oval.

This is on May 9th right after the cast was removed. The tissue looks good, the orange at the bottom is drainage. That hole is the only deep spot still remaining, but it give access to the bone.









Also on 5/9, this is after cleaning and debrieding. the purpose of this is to show that the tissue has good profusion - the tissue has blood flow. It makes it healthy.










This is 5/14. The tissue continues to grow, but the hole at the bottom is persisting. This place will be the most difficult to close. After debrieding this, the tissue looked similar to the photo above, but the wound looks smaller - it is marginally.