Road to Recovery, Part 2: ACL Reconstruction Days 13-21
Updated: Jul 26, 2020
I will need to go back and see where I left of on my journey in the last post (here) about my ACL.
So I will pick-up on day 11. I went to the TOC Now Clinic, basically an urgent care for Orthopedic needs only. I had been running a fever and the incision on my Tibia was weeping pretty significantly.
The PA said I had an infection and gave me oral antibiotics. He took a picture and text it to my surgeon to give him a heads up. That was a Saturday and they scheduled me a follow up for Wednesday with him. The office called me a few hours later and said that Dr Thompson wanted to see me on Monday morning.
Sunday, Carolanna, his PA, called and she said that she wanted me to come in fasting. If Dr Thompson didn't like the way my wound looked, we would go down to the surgery center for an emergency I&D (incision and drainage) to clean the wound. We went in, I was hoping that he would just want to check the wound and let me be, that there would be enough healing that he was okay with it.
And things went completely opposite of that.
Dr Thompson talked to me about how much concern he had for this and that in his gut, he felt it needed to be cleaned out. He wanted to wash my knee joint and debride the wound, get it all clean.
So we headed down the hall to the surgery center for surgery #2.
When I woke up, he was there waiting with another blow. He was admitting me to the hospital on IV antibiotics and wound care.
Monday night, around 10:45, I got into a room. Over the next few hours, a couple nurses poked and prodded, looking for a good IV site. I had been fasting for so long though, the rivers were dry.
Finally about 12:30, the IV team came and got one in. And my antibiotics and blood work began. At first I was on Vancomycin and Cefipime, twice daily. I was a middle of the night patient- which is awful. Because they started my meds in the wee hours of the morning, they would go every 12 hours. I was a 3am blood draw and 4 am meds, with vitals every 4 hours. Exhausting!
Tuesday morning, Dr Thompson came in to see me and talk about our plan. He said that while we waited on the cultures to come back we would continue with these 2 antibiotics because they were pretty strong and sure to knock out whatever was causing all the issues. He was going off of my physical presentation, which wasn't great. I was spiking fevers, having some pain that was just awful, and I just looked sick. He said that he would like to go back in and do another incision and drainage, he wants to make sure we get the knee really clean to ensure the health of my new grafts. So he scheduled me for Wednesday morning surgery #3.
Wednesday was terrible, awful, no good. At this point, I haven't used my leg in nearly 4 days. It's been cut open twice and washed, flooded with water and cleaning agents. I haven't hardly eaten in days because of fasting for surgeries. The hospital's COVID visitation rules meant I had to mentally deal with everything on my own, there was no one to visit and no one to share with. I couldn't walk, I was exhausted but couldn't sleep. 2 wound vacs and purple arms from failed IV attempts. I still didn't feel well, night sweats, nocturnal fever, fatigue and insomnia, and depression. My labs were all over the place with highs and lows that didn't belong, and I couldn't make heads or tails of it all.
Infectious disease came to see me Wednesday afternoon, she said that my cultures from Monday were still pending, which means there is something growing on it and they are identifying it. That doesn't make me feel better, you know? She does decide though that we are going to change from Vancomycin to Daptomycin. They pulled a trough on me and it was 3, should be over 10. So it is sub-therapeutic and not doing me any good. She looked at my IV site and said she didn't like the way it looked, she wanted a new one put in. I said no. There is no where else. They have stuck me 9 times, I can't do it again. There are no good places left to hold up to an IV. She ordered a PICC line to be placed. I'll need it after discharge anyway, for 6 weeks, she says. Great.
We're going to stray from the story line here a little. Because I feel like this part of my story needs to be said out loud. Bare with me. At my first surgery in the outpatient clinic, I was given the nerve block, remember. When I woke from my second surgery, I was in a significant amount of pain that IV medication didn't help. I received another nerve block that wouldn't last but maybe 18 hours. That was Monday. On Wednesday, I talked to Dr Thompson about having the nerve block again, to reduce my pain upon waking up. He agreed. The anesthesiologist who was present also agreed that if I woke up in pain, a nerve block would be done and I would be kept comfortable considering all that I had been through to this point. I was grateful. Unfortunately, somewhere between that conversation and my waking up, I had a different physician. I woke up in the worst pain I have ever experienced. I could barely speak my mouth was so dry. I was alone in an OR recovery room. The nurse who appeared at my bed looked annoyed that I had interrupted whatever she was doing by waking up in agony. I asked for ice chips and was denied. I could not speak, for the dryness in my mouth. I was in pain, visibly. An untrained eye could have told you that. She pushed a medication clearly marked on my arm band as an allergy. I am not in excruciating pain and breaking out in hives. She waited 20 minutes to give me Benadryl because she had to confirm with a physician. The nurse never introduced herself to my, fortunately her name badge faced forward and I was lucid enough to commit it to memory for later. I was passing out from pain. I remember these extremely vivid dreams, so life like and real, and then I would sit up gasping for air. I was crying. I was struggling to breathe. I was shaking. I asked again for ice and was given 2 chips. I asked for a nerve block. I asked for a doctor. I was desperate for anything to be done to help me. An anesthesiologist shows up at my bed and again, I ask for the nerve block. I try to explain it was already discussed with the other physicians. Please, it hurts so bad. He said he doesn't want to. He walks away.
I laid in an OR recovery room for 2 hours, blacking out in pain and fear, when the physician walks back in and says fine but if your infection spreads it's not my fault. A second nurse appears, slightly less friendly than the original. He throws my blankets off my leg, then proceeds to bend it into a frog leg position. The leg that I have just had 3 surgeries on. I am crying, uncontrollably by this point. I am terrified and I am alone and I just don't know what is going to happen to me there. He painfully completes the nerve block, laughs and pats the nurse on the shoulder and says, and I will never forget his voice, "I should have done that 2 hours ago. Get her out."
Before you ruffle your feathers, keep reading.
When I woke up from that experience, I called for my case manager. And I told her, in all of my tears and glory, what happened to me downstairs.
My case manager happened to be a personal friend. She said that won't stand at all.
Over the course of a few hours, I spoke to 6, yes 6, hospital administrators and managers. Dr Thompson got word and when I saw him the next morning, along with a profuse apology, he said that that particular doctor had been taken care of, as had those nurses who showed no compassion or decency to a human in pain and fear.
I give you that story to tell you this part- do not be afraid to say "That's not okay" when something happens. Doctors, nurses, surgeon, management... none of their titles make them above caring for the value of human life in any way. Advocate for your health by saying "I feel this way" and don't be swept aside as I was in that recovery room.
Back to our story...
Thursday morning, Infectious Disease comes back. She said that I might be able to go home Friday. I was so excited! I text everyone and let them know, the nightmare is over. I get to leave. A little cut up, bruised, and tired, but I get to go home. She explained the procedure, I'd need to go directly to their office to get meds and set up for my antibiotic infusion at home. I didn't even care, I was going to leave! 4 days in the hospital felt like an eternity.
Thursday afternoon, Dr Thompson's PA, Carolanna, comes in to see me. She doesn't say much about discharge, just that it's Dr Thompson's call, but that she did see the note from ID about letting me go and she was just there to look at my drains, etc.
Friday morning, they start to talk about discharge. Infectious disease is trying to get me out because I need to get to their office before it closes and discharge takes a few hours to complete. Dr Thompson walks in though, and sit down.
If you sit down to deliver news, it's not good. Everyone knows that. There is no mistaking it, he's here with something I don't want to hear. My whole body felt it. The deep breath, and folding of the hands let me know I'm right.
Your cultures are in, he begins with. You have a Pseudomonas infection. It's a bad bug, it's a gram negative rod. It's dangerous. He took another culture on Wednesday during the I&D, it should be in in the morning, and he said he hopes it will be negative for growth. At this point, he says, he's going off of my clinical presentation. My vitals are still showing fever spikes. My blood work still has high WBC. My inflammatory markers are still 3 and 5 times normal. I don't look good, my coloring and physical presentation. I'm still sick. He said he has thought really hard and he just can't let me go yet. He said, if someone were to call me for a consult on a case that looks like this, I'd tell them to wash the knee until the cultures are clean. And that's what we should do. We should wash the knee until the culture is clean. But we're are going to be 3 I&D's in, and if the 3rd culture isn't clean... we need to take out the grafting and wait for you to heal, and try again later.
Here is where you insert crying. I tried so hard to be brave and strong and confident, but I won't lie. I fell a little bit a part. I said, it's been a hell of a ride this far Dr Thompson. I don't know what to say or think and I don't know how I feel other than scared. He said, I know. I'm on the ride with you, this isn't how I wanted it to go or how I thought it would. Everything looked so promising in the beginning, it went flawlessly. But I just can't let this go. I can't let you leave knowing it's not under control. He said, we will go back to the OR tomorrow morning and wash it one more time. We'll take another culture. We'll go from there.
He left and the tears just came. No sobbing or sound, just silent tears falling as I took it in.
What happened. Where did things go so wrong. Why. How could I fix this. What was going to happen in the future. Would I be okay.
I reached out, let everyone know of the change in plans. The current and future plans, asking for prayers. I turned on worship music and let it flood my room as I waited to feel the calm that wouldn't come to me. My mom had flowers sent to me (they went to my house since the hospital doesn't allow deliveries like that right now) and my husband brought them into my room for me. It was a small thing that brought me some love from the outside. It meant a lot.
Saturday morning, we went back to the OR. For the 3rd and final surgery.
Dr Thompson was in my room when I woke up, waiting to tell me what happened. I needed a quad release while I was asleep, I had locked up from immobility. I woke up with my leg in the CPM machine, wrapped in ice and moving. He said it all looks really good inside. It looks clean, the fluid is not nearly as bloody as it was in the beginning. The grafts look healthy, too.
They did take the cultures and they'll see what grows. Meanwhile, my cultures from Wednesday's I&D had come back and they had a colony of growth. The good news is the sensitivities were back as well and it was sensitive to everything. That means the antibiotics are good, we can even take 1 away. Infectious disease dropped the Daptomycin, leaving me on Cefepime only.
Physical therapy came to see my Saturday and Sunday, they got me moving and stretching. 1 hour of therapy was exhausting and I got some much needed rest. With no new surgery on the horizon, I was able to eat. While we waited on cultures, I decided I wasn't going to lay in bed and feel bad anymore. I had a life to get back to and I needed to get out of there.
With a little help, I showered, washing off all of the antiseptic that had been wiped on me for so many surgeries. Shampooing my hair, letting the hot water just run over me. Cleaning off the sadness.
I put a shoe on, and walked down the hallway. I stared out the window, hoping to soon be allowed out there. Untethered and healed.
Monday morning, Dr Thompson came back. He didn't sit, which gave me a glimmer of hope that this was the end. But I held it tight to me, waiting for whatever he had to give. He said, I think you can go home.
My culture had come back and still had some growth, but I hadn't had a fever in 48 hours. My white cells were closer to normal than they had been. My inflammatory markers had come down some. I had color back.
Clinically, I looked like I was finally on the uphill swing of this. So I got to go home! I was released and sent straight to infectious disease. My PICC line was going home with me and I had to go learn how to use it. I picked up enough medicine balls to last 7 days and saline and heparine syringes. They showed me how to flush it, how to draw blood back, and how to start my infusion. I had an appointment with Physical Therapy the morning after I got home and follow ups scheduled with Dr Thompson.
I may have been sent home but it was definitely not over yet.
Now, we can talk about how this feels.
Mentally and emotionally.. Physically, it sucks. That part is obvious. 4 surgeries and a 9 day stretch of being hospitalized and unable to use my leg is not ideal.
Mentally and emotionally, this has been really difficult. I'm an on-the-go person and hate to be sitting still for too long. I have kids and it's summer. Nothing about being stuck on the couch or in bed is appealing to me. Being an in-patient for the first time in my 30-year life (aside from child birth) was miserable! I've struggled not being able to clean my house, go wherever I want when I want to. It's been a challenge to not seem bossy and grumpy when I need to get something done because I simply can't do it on my own.
I cried in the hospital, alone. Due to Covid-19, the restrictions are tough. 1 visitor per day. So if the visitor can only stay for an hour, that's the only visitor you can have. That leaves you to face all of the hard things alone. Completely by yourself during some of the hardest times. That hurt. Especially on the day Dr Thompson told me I wouldn't be going home, instead I would have another surgery. Another surgery that could lead to another one. Dealing with an infection that was threatening my reconstruction and overall health. I held it in during our conversation but the minute he left, I just let it go. There was true sobbing. Anxiety of another 3-5 days in there. Pain and physical aching, my heart was breaking. So as the tears fell, I let them.
Sometimes, we have to realize that we have lost control. That there is nothing we can do, humanly, to stop the tides from their path. I had lost my control. Nothing in my power would stop what was happening. I couldn't operate on myself, I couldn't make sure tests were done right, I couldn't do my own therapy. I couldn't go to the bathroom on my own. My power in my healing was gone. I had to turn everything over to a surgeon I trusted and a team of strangers. I had to trust that they were there for me, to get me better and get me out. I had to believe that.
I saw Carolanna and Dr Thompson 1 week after discharge to remove my staples. I was SO glad, that was itching very bad! I was a little afraid to see it. I mean, how bad was it going to look after 4 surgeries using the same incision spots. I wasn't as bad as I thought. Also, a little afraid to have staples removed, like, how much was that going to hurt. I was tired of pain. Didn't feel it. Well, I felt 1 of them haha.
She put steri-strips over them and said to let them fall off on their own, don't scrub them. So no more plastic wrap on my leg, yay!
It took about 2 weeks before the steri-strips began to fall off. They were stuck on there good!
When the first one came off, I was a little let down. That tiny, tiny little scar. So small. Like we didn't walk to hell and come back. That week, all of the strips started to fall off, giving me a glimpse at what would go with me for the rest of my life.
I am okay with it. Scars are tattoos with better stories. Scars are proof that I've lived. They show me that I have been sick and been healed, I have been down and got back up. Scars remind us of our humanity, that we are here but for a second. One day, these will be my story to share with someone who is also struggling. I can use the terrible, awful to encourage someone one day. That's what I am going to look for, the someday someone.