Discouraged (by Lindsay)

Our house is turning into a hospital. 

We have medical supplies in almost every room.

We've been on a bit of a "recovery roller-coaster" since I was discharged from the hospital a week and a half ago. 

I was discharged with a portable Wound Vac for home use (24/7) and I have a home-care nurse who comes every Monday, Wednesday and Friday to change the dressing and evaluate the incision. 

My portable Wound Vac

It's nice to have a carrying case for the Wound Vac!

I was also sent home taking the oral antibiotic, Ciprofloxacin. Unfortunately, after a few days, I began to experience very negative side effects from the medication...extreme fatigue, nausea and horrible dizziness. 

By Saturday (11/12), the side effects had gotten so bad that I had to call my infectious disease doctor, and he instructed me to stop taking the Cipro for the rest of the weekend to see if I felt better.

I felt MUCH better :)

So Monday morning he prescribed Levofloxacin, which is very similar to Cipro, but some people have an easier time tolerating one versus the other. Unfortunately, for me, the side effects were the same as the Cipro, only this time I was vomiting as well. 

I called my doctor that evening and he told me it was time to have a PICC line put in so that I could receive IV antibiotics at home.

He ordered the PICC line on Tuesday, however, our insurance company took quite a while to approve it. Because I had gone a while without antibiotics (and we still hadn't heard from our insurance), on Wednesday evening, my doctor had me go to the ER to receive a dose of the IV antibiotics. Then I had to go again on Thursday evening (ER visits are not fun and not cheap).

IV antibiotics in the ER :(

Finally on Friday, we got the approval from our insurance. I had the PICC line placed this morning (Saturday), so now I will be receiving my new IV antibiotics at home!

I am taking Cephtriaxone for six weeks and then we will reevaluate. I get one dose every 24 hours (which I am learning how to administer myself!) and then I'll have the dressing on my PICC line changed every week (this is a sterile process, so it has to be done by a nurse). I already have my wound vac dressing changed three times per week, so my nurse will also change the PICC line dressing during one of those visits. 

New PICC line

Everything that goes into the PICC line for each daily dose of antibiotics

Getting ready for my first dose!

One step closer to getting my M.D. :)

To protect the PICC line when it's not in use, the nurse suggested cutting a tube sock to cover it :) I've already ordered myself some knee-high Christmas socks to cut and start using the day after Thanksgiving ;)

Our dining room has become my "hospital room"

We are feeling so relieved now that I'm receiving the IV antibiotics...it had been a very stressful week knowing that I wasn't getting the medicine to help fight this infection and prevent it from spreading to the hardware or my bones.

I saw my orthopedic surgeon this past Thursday, and overall he was happy with how my incision looks, especially considering how long I had gone without antibiotics. He's having me continue to use the Wound Vac 24/7 for another two weeks and he will reevaluate the incision at that point. He's hopeful that it should be healed enough to remove the stitches then. He did, however, instruct me to no longer bear any weight (even on my heel) for the next two weeks. I've had a significant increase in pain this past week, but luckily it's become much more tolerable since I was told to stop walking on it (as inconvenient as it is). 

However, our moods went a bit downhill yesterday. 

When my nurse came for my Wound Vac dressing change, we unfortunately found that another hole is developing along the incision, with infected tissue at the bottom. This hole was not there 24 hours earlier. We're confused about why it's there...I had already received two doses of the IV antibiotics and I had been non-weight bearing since we last looked at the incision (when the hole wasn't there). We know that the healing process can take a long time, but it's not typical for the incision to get worse. And we also know that things can develop/change extremely fast with this type of infection.

My nurse was concerned. She called both my orthopedic surgeon and infectious disease doctor to let them know. We're really hoping that my incision will improve by keeping the Wound Vac in place and consistently administering the IV antibiotics. We won't get to see the incision again until my next dressing change on Monday. If there is no improvement, I will need to have it looked at by one of my doctors (currently my next appointments are scheduled for the week after Thanksgiving).

Our emotions have been ALL over the place for the past few weeks. One minute we think we have things under control and are headed in a positive direction, and then we receive more concerning news. 

We're discouraged.

This is no longer about the inconvenience of recovering from four surgeries. For the first time, this past week I broke down with the thought of, "What if..."

We're scared. 

My Foot - Surgery #4!! (By Lindsay)

Well...

A lot has happened since my post last Friday about the infection in my foot.

It continued to get worse and by Saturday I ended up in the emergency room at Edward Hospital because of a hole that had developed in my foot.

The ER doctors were concerned that the infection had possibly spread to the hardware in my foot and/or bones. They called my orthopedic surgeon (Dr. Arndt) and I was admitted to the hospital and started IV antibiotics immediately. They scheduled me to have surgery #4 the next morning (Sunday) to try to get rid of the infected tissue and to see if it had spread (the surgery was performed by Dr. Arndt).

The surgery went well, and there were no initial signs that the infection had spread to the hardware or my bones - yay! Dr. Arndt successfully removed all of the dead and infected tissues, and took many cultures to determine which infection(s) were present. All but one culture has come back, and so far I've tested positive for E. coli (not the type that's common with the digestive tract, but a kind that can sometimes occur in an incision after a surgery). The team immediately switched my IV antibiotic to one that is geared toward this type of E. coli. 

They placed a "wound vac" in place, which essentially is a foam pad over the incision with a tube that connects it to a vacuum-type machine. This machine virtually sucks out any drainage as it develops, helping to prevent another infection from developing and speeding up the healing process. I will be using the wound vac at home 24/7 for the next two to three weeks, having a home care nurse coming three times per week to change the foam pad dressing. 

I had my first dressing change in the hospital today, and was pleasantly surprised to see that most of the incision had been able to be closed with stitches! We were told by the wound care team that the foam pad is typically placed inside the open wound and changing it is very painful. But since I have the stitches in place, the wound is almost completely closed, so the dressing change was a piece of cake! They will continue with the wound vac, as there still has been drainage, and we need to be certain that it gets sucked away from the incision. 

I was discharged from the hospital this afternoon (Tuesday)! However, I was told that this next week is critical to ensure that a new infection doesn't develop, as the tissue in that area is very fragile. I was sent home with an oral version of the antibiotic for this strain of E. coli, which I will probably be taking for several months. Having so much hardware in my foot puts me at a higher risk of an infection developing and/or spreading in that area. 

My instructions for the next week basically have me elevating my foot as much as possible. The wound care team said that I need to avoid any swelling as much as possible, as that is basically drainage inside the wound that can cause another infection. I can still be up and around briefly using the crutches or knee scooter, but only when I really have to be. 

In one week I will go back to Dr. Arndt to check my progress and see where to go from there. Fortunately, from an orthopedic standpoint, nothing has changed in terms of my recovery from surgery #3 six weeks ago since my bones and the hardware were not affected by this infection. I will also be needing to go see the infectious disease doctor in a couple weeks so that he can assess the wound and take cultures to be sure that I continue to be infection-free. 

We cannot even begin to thank all of you for your kind words of support, thoughts and prayers during all of this! And especially to those who have been helping out with our family while I've been in the hospital for the past four days (and of course those who've called, texted, emailed and visited me)!!

Many of you have asked how you can help (we don't even know what to say...we have been SO blessed by our very LARGE supportive community over the years with Ella's diagnosis & surgeries, and now my surgeries in the past year!). 

Right now we're still trying to figure out what our needs will be, as this infection/surgery was unexpected and we're not sure exactly what my recovery will entail (there may be last minute appointments, setbacks, etc.). A lot of people have asked about starting a meal train, and we definitely feel that dinners will be extremely helpful right now! However, with the uncertainty of what each day will bring, it's hard for us to commit to any type of schedule for people to sign up to bring a meal. For those families who have asked to bring a meal, we are wondering if it would be possible for a couple families to go in together on a restaurant gift card for a place that either delivers or has carry out. We've learned from Ella's past surgeries that this provides a lot of flexibility for us when we aren't 100% certain of what each day will bring. 

We're not sure yet if we'll be needing an extra set of hands on weekdays once the kids get home from school before Michael gets home from work. We will have to take it one day at a time and go from there. 

Again, we can't thank everyone enough for the love and support you have given to our family. We are so incredibly comforted knowing we are not alone during all of this!!

My Foot (by Lindsay)

An update on my right foot...

The surgery that I had back in September was a success! My orthopedic surgeon was able to cut and remove the part of the bone that was causing the added stress to the other joints of my foot. He inserted a new plate as well as seven screws to hold everything in place, which will all be permanent. My bones have not yet started to fuse together, but they will as it heals.

I was non-weight bearing for about the first four weeks after the surgery (a little longer than expected, but my doctor wants to be sure that this surgery AND recovery are done correctly). By about third week of being off my foot, I was basically pain free!

Two weeks ago, my stitches were removed and I was given permission to start walking on my heel with the boot cast on. Of course I was very excited, as a whole new world had been re-opened to me! It's amazing what we take for granted!

A couple days after that appointment, I started developing some pain in my foot, which I assumed was from the new weight-bearing. 

Then it got worse.

By the following Monday, I could hardly handle being in a vertical position, let alone put ANY weight on my foot. I called my orthopedic surgeon and we discussed my incision and the area surrounding it.

The incision was a mess. It was constantly oozing and had an odor. There was redness around the incision, which was hot to the touch and spreading. My entire foot was starting to swell. 

Infection.

He immediately put me on antibiotics and within a few days I was able to put a little weight on my heel again (although it was still pretty painful). 

10 days later I finished the antibiotics and I had another routine follow-up with my doctor (yesterday). While my foot does look better than it was, he was not happy with how deep the infection has gone into my foot. The incision still looks pretty bad and I'm also in a fair amount of pain. And I've been having off-and-on fevers since the infection first started.

He started me on another round of antibiotics and is having me do a "wet to dry" dressing every day (a gauze pad soaked in sterile saline solution placed on the incision, followed by a dry gauze pad, and then covered with an ace bandage wrap around my foot/ankle to hold it in place). I am also to stay off my foot again and elevate it as much as possible. 

Wet to Dry dressing materials

I'm going back to see him in a week (next Thursday) to reevaluate. 

If the infection has not shown significant improvement, he said we'll need to go back to the operating room to address the issue. 

Ugh.