And Then Came the Light

In case you’re stumbling upon this story late in the game, click here to get up to speed.
While still in the hospital, the infectious disease team was working hard to try and find the most effective combination of antibiotics to attack each of the different bacteria causing the infection in my lung – especially the E.coli. Once that was figured out, the tough decision about how to administer those antibiotics to me had to be made. It was determined that due to the severity of the infection itself and the type of bacteria causing it – the best hope of getting rid of this infection was to deliver the antibiotics straight to my heart. I remember nodding when the doctor told me this. Like, “Sure. That sounds cool. Whatever ya gotta do doc, just make me better please”. When the words ‘procedure’ and ‘IV’ and ‘port’ came up in the conversation my brain started spinning again. Little did I know, but to deliver antibiotics straight to your heart, you had to have a ‘port’ inserted inside of you – a PICC line (peripherally inserted central catheter). Simply put – it’s a way to administer chemo, antibiotic or nutritional therapy to someone over a long period of time to avoid damaging their veins by repeated use. So, the next day, I was strapped down to a table and prepped to receive my PICC line. I’m not sure what I had in mind when they described the procedure to me but this was yet another moment where I was so very thankful to be naive. If I had to do all of this over again, knowing exactly how it was going to go, how it was going to feel, where they were going to poke me, and how long it would take to recover – I’ll be honest, I don’t think I would make it. The PICC line was inserted right above the bend in my elbow; right in the meaty muscle of my arm. They gave me multiple numbing shots before they started the procedure; which, ironically, are quite, quite painful. There was a man who was using some sort of sonogram machine to watch the path of the PICC line and help to guide the doctor who was placing it inside me. I don’t remember feeling too much as it was happening, except a little tingling in my arm and chest. I was mainly just very creeped out that something was being put in my arm; slithering it’s way right to my heart. It was over fairly quickly, thank God, but I do remember being very shocked at the amount of blood being cleaned up after all was said and done. Hello people, don’t you know I’m kind of running low on that over here?! 

Of course after this was taken care of, I only had one thing on my mind – when and how do I get to go back home?? My surgeon assured me he was doing everything he possibly could to get me discharged ASAP but that my next step was to meet with a physical therapist for a few days to make sure I was able to minimally take care of myself when I got home. The physical therapist was so young and so sweet. She was a mommy herself to a young baby and was so heartbroken by my story. She wanted to get me back home to mine as quickly as she could so she came and saw me three times a day – and she hurt me. She hurt me so good.  The muscles in my back that had been cut through to get to my lung needed frequently moved. Easier said than done. But my therapist assured me that a lot of pain in the short-term would save me from much more pain in the long run if these muscles didn’t heal well. She also forced me to walk up and down the stairs and around the floor; again and again for hours each day. I was shocked and amazed at how difficult those simple tasks had become. After surgery, my surgeon told me that even though he had cleaned out my lung and fixed everything – because of the amount of tearing/scraping he had to do in there, I would have a lot of scar tissue. Which would ultimately lead to a loss of lung function for the rest of my life. Though not a large amount, still noticeable at times if I didn’t work to strengthen myself back up. So much of my recovery and healing process rested on my shoulders. 

Once physical therapy had been going well, more steps were taken to get me home. It was the ultimate plan/hope that I would have all chest tubes removed prior to going home. The fluid being produced by each of them had dramatically declined since surgery and all things were pointing in the direction of having them removed and sending me home. Except for one minor detail – the infection. If my surgeon were to remove my three chest tubes and close the holes where they once were and if the antibiotics were unsuccessful, there wouldn’t be much they could do for me. But if they were to leave my lung ‘open’ with the chest tubes still in place and the antibiotics did not work, they would have immediate access to try a Plan B. As much as my surgeon hated to not be able to keep his promise to me, he knew that it was the best thing for my health. He did however throw me a bone and decided to take out just one of my chest tubes prior to going home. Oh man, the chills are starting as I think back to exactly how that felt. I remember him telling me, “Oh this will be nothing, trust me. It will feel a lot better to have it out. I’ll do it fast and you won’t even know”. He cut the stitches that were holding it in, grabbed ahold of the tube, told me to take a deep breath in….and then OUT, hard. And just like that, while I was exhaling, he yanked that tube out of my lung. I can’t really compare the sensation to anything I’ve ever felt before. Just that it made my eyes water, made me gag, pee myself a bit and get goosebumps all over my body – all at the same time. Knowing that I would have to experience that 2 more times made me want to keep them in my body forever.


It was Easter. My baby’s first Easter. I know, I know. She had no idea what was happening or what Easter even was. But it was still something to me. And on a morning where I would normally wear a brand new Easter dress and be on my way to church – I was sporting a cotton hospital gown, beautiful hunter green slip proof socks, and the same ponytail I had worn into surgery days before because I still couldn’t lift my arm above my head. BUT on that day, my surgeon burst into my room, bright and early, and gave me the best news I had received up until that point – I WAS GOING HOME. I called my husband right away and told him the good news. He packed up the car and the baby and headed down to the hospital to bust me out of the joint. And when he walked through my hospital room door carrying our baby – all dressed up in a brand new Easter dress for mommy, all the bad melted away. Reality didn’t exist in that moment. It was our baby’s first Easter morning. Our first Easter as a family of three – and it was the best. 
                                                                                             Easter Morning

Well the day certainly dragged on. I had to get my last iron infusion and my last scheduled dose of antibiotics and pain meds before they could send me home. But finally, the time came. Everyone helped me get dressed, loaded me into a wheel chair, handed my husband all of my discharge papers and prescription orders and said “See ya later”. It was around 6:00 pm when we finally were able to leave. We thought it would be a good idea to get all my prescriptions filled right around the corner from the hospital and then make the hour drive home so that we would be able to completely relax when we got there. My husband went into the pharmacy and came back fairly quickly. He mentioned they didn’t have 1 of the prescriptions but we didn’t think anything of it. Our Plan B was to wait until morning and try a different location closer to our home. But by God’s amazing grace and timing, about 3 miles down the road and right before getting on a major highway, my phone rang. I knew upon discharge that I was being released to go home but was by no means being released from care. My surgeon and team had set me up with a home nurse as I would still need a lot of help. A wonderful voice was on the other end of the phone attempting to schedule her first visit the next morning to our house. Just before getting off the phone, she doubled checked to make sure we had gotten all of the “supplies and medicine”. This caught me very off-guard as I assumed she would simply be bringing those things along with her. I remember a long, long silent pause on my end of the phone. I quickly yelled “Babe, stop! Pull off the road now!”. I told the nurse that I did not have any supplies and that the only medicine I had scripts for were my pain meds. 

Turns out, that one script that the pharmacy didn’t have – the one that we just assumed that specific location was out of – actually needed to be sent to the medical supply company that my home nurse was associated with. It was an order for 6 weeks of intravenous antibiotics and all the supplies needed to administer an IV every 8 hours each day of those 6 weeks.
 
 It was now 7:30 pm and the nurse was to be at our house to continue my treatment at 8:00 am the next day. It was crucial that I had those meds there so she could give me my IV – these antibiotics only work if they are given regularly and at the correct times. No one at the hospital had communicated any of this to us. And it was very apparent that they hadn’t communicated my needs with any medical supply company either as they had handed me the tiny piece of paper and expected us to walk down to Walgreens and pick up everything I needed. My husband flipped the car around and sped back to the hospital. We pulled into the main entrance, he told me to stay in the car with the baby and he would be right back. I was in a lot of pain and my daughter instantly knew the second daddy was no longer in the car and started screaming. There wasn’t much I could do for her; I could barely move without being in excruciating pain and all the tubes coming out of my chest with the drainage boxes connected to them were very hard to maneuver. I remember it seemed like he had been inside FOREVER. My daughter was still crying – screaming actually. She was crying so hard that at one point she spit up and started to cough/choke. I remember freaking out, opening the door, jumping out and getting into the back seat to help her. I sat her forward a bit and she started to breathe again. I was hysterical. At that moment all the pain that my adrenaline had just blocked out came rushing back to my body. I was angry and scared and frustrated and sad and tired and DONE. I called my husband bawling and told him what had just happened; he ran down to the car and got us both and said, “That’s it, you both are coming in with me “. I remember he said “Let me go get a wheel chair and I’ll be right back”….but conveniently, the door that he had just walked out of at 7:59 closed at 8:00. So when he walked back up to the door to get a wheel chair – we were locked out of the hospital. It was at this very moment my husband finally BROKE. This tiny straw made the weight he was already carrying too much to bear. He put the baby back in the car, helped me in and drove with such urgency to the ER entrance, we had all kinds of people coming to greet our car. He told them I needed a wheel chair to get in and he had to get a baby out of the car. Two male nurses scooped me up, into a wheel chair and immediately into the ER. I think there was a miscommunication though because when my husband finally got into the hospital to meet me so we could go upstairs and work our situation out, they were trying to check me in to the ER. We tried to explain to them that I had just been discharged, there was an issue with my aftercare plan and that we were only here to solve it. But since visiting hours were over, we were technically not allowed to be wondering the hospital by ourselves- even though we knew exactly where we needed to go. My husband got so aggravated that he took the baby and went upstairs to try to resolve things on his own so that he could simply take me home – that’s all he wanted. His plan was to have the nurses upstairs call down to the ER and have them wheel me up to where I needed to be. But shortly after my husband left the ER, security had been called. I was now stuck in the ER and they were refusing to take me anywhere outside of the ER waiting room. I began to think this was all just some sick joke being played on us. Like, how many obstacles can we throw in front of them and how many will it take to break them. Finally, my husband had threatened some lives (no joke whatsoever there) and a very nice man came right down to escort me upstairs.

No one had any idea of what was going on when we went back to the hospital that night – mass confusion on all levels. Fortunately, and at times unfortunately, throughout my journey I got to see the bright side of the medical field. I got to see awesome people who truly cared for others and spent their lives serving patients. I got to see doctors and surgeons who made it their life mission to save lives; to make people whole again. But I also got to see a broken system. I got to see what happens when you aren’t taken care of; when you’re viewed as a number instead of a person/patient. I got to see what it was like to be the only one fighting for my well being; advocating for my own health over and over. I got to experience what it felt like to be in an already crappy situation only to have it made worse by politics and paperwork.

2 hours went by. 2 hours spent sitting in a hospital hallway, in 
excruciating pain. 2 hours spent listening to my baby fuss and cry because she was tired; she was exhausted just like mommy. She had 1 diaper left and had just finished the last bottle my husband had packed for that day (not anticipating how long this day would be). I was so mad that I was calm. I didn’t even have the energy to be angry. I just wanted to go to sleep and wake up when this was all over. I begged for them to readmit me so that they could take their time fixing the mess they made. But finally, finally – it was taken care of. After many screams, tears, phone calls, emails and someone driving an hour out of their way to cut the middle man out and make things easier for us – I had a giant box of medical supplies on their way to my front door. God bless the woman that heard our desperation, that felt our need, and dropped everything in her life to drive to the hospital that night in her PJ’s to fix this. Add her to the long list of overlooked answered prayers during this long journey. We officially got to go home together and spend Easter at home…the 45 minutes of it that were left.
 
The next morning started a long 6 weeks – for everyone involved. My home nurse came and got me all set up to get 3 IV’s a day. She drew blood out of my PICC line to monitor the infection. She cleaned all my incisions and bandaged them back up. She taught my husband how to give his wife an IV – every 8 hours. But what she couldn’t teach him was how to juggle taking care of a very sick wife and a very new baby on his own. But answered prayer #478 – God gave him the most unwavering strength. God gave him the patience to wait on me hand and foot. God gave him the perseverance to set alarms for the middle of the night to wake up and give me my next scheduled IV. To wake up to my screams for more pain medicine. To wake up to our babies screams for a bottle, and then a new diaper and then just some cuddles. I am still in awe of the way he carried the weight of the situation he was put in. I am eternally grateful for the complaints that he kept me from hearing, the sighs he held in, the breakdowns he hid. Looking back, I’m still not sure how he did it. I’m not sure I want to know what it would have been like without the amazing miracles God worked into our lives.
 
Recovery wasn’t easy. Recovery was painful. Recovery involved having to sleep sitting up for 4 months because it was far more painful to lay down. Recovery involved some sort of doctors appointment almost every single day. It involved countless blood draws and IV’s and x-rays and tests. It involved loss of appetite, loss of weight and energy and ultimately led to the loss of being able to breast feed my baby. It seemed like forever that I had to carry those chest tubes boxes around with me; I can still hear the sound of them clanking together as I walk. There were days I felt like I was losing my mind from not being able to do anything. From being in constant pain for so long. From having to miss out on another diaper change or feed because I couldn’t hold  my daughter. There are still days where I feel like maybe I did lose my mind back there in the darkness. 
 
But the light was not gone forever. After 3 weeks, my blood tests were looking so good that I got to have one of the two remaining chest tubes taken out. And fairly soon after that, I got to switch to oral antibiotics which meant goodbye final chest tube and see ya later PICC line. The scars from each still remain. The permanent marks on my skin are a constant reminder of all I’ve been through. They are a constant reminder of how very blessed I am to wake up each day, to take a deep breath and fill my lungs with air. They remind me of my true strength…and my weaknesses. And when my daughter sees them one day and asks “Mommy, what are those?” I will tell her…. “They are mommy’s scars baby. They are marks that remind me just how precious you are. And just like Jesus’ scars on his hands and feet when he saved us on the cross, he gave me some of my own when he saved me again. They are marks that I would want 1,000,000 times over if it meant giving you life each time.”

4 Comments

  1. Lisa Cunningham

    Courtney, I loved reading your story. Your husband is one strong man. God put him in your life, knowing he would stand by you. You both are truly blessed with this beautiful baby girl. Hugs to you, you are strong and beautiful.

  2. Candace Scarmardo

    I have read and reread your story. I am amazed at the strength that God gave you and Kevin. It is truly a miracle. Your faith is absolutely beautiful and your story is so encouraging to those who lack faith. You are a blessing and God has used you to speak for him. Thank you for sharing your real life story. God is good all the time, even in our darkest moments.

  3. Wow, your story. I’ve never read a birth story like that. I teared up reading it and kissed my sleeping baby a few times. You have such strength, you and your husband both.

  4. Oh my goodness wow, what a birth story. It is so not fun when things get complicated. I had our 2nd baby 5 months ago and I got an infection after birth too, though not as serious as yours. I had lost a lot of blood at birth and this was not communicated to the surgical team who couldn’t figure out why I went into shock after surgery to repair the tear. Thankfully they were really great at helping me get better once we worked all this out.

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