Saturday, June 6, 2015

Week Two

That weekend was the 21th anniversary of my sister's death from Cystic Fibrosis. It was pretty surreal thinking about her short 12 years living with varying degrees of respiratory failure as I struggled to breath myself. I knew I would recover and eventually life would go back to normal. She never had that luxury. It made me miss her more, having a small but personal glimpse into her battle. Its true you can't understand what a person endures until you walk in their shoes. I won't presume to understand the depth of pain she experienced, but in moments of this journey, I wish I could let her know how much I respected her fight.

Tyler went back to work that Monday. I was terrified to be left at home alone with a toddler, but he had already been caring for us for the past 13 days. I still couldn't lift my daughter, so I changed diapers on the couch or floor and we watched a lot of television. Tyler came home at lunch each day to check on us and put our daughter down for a nap. I'd get her out of her crib later in the afternoon by pulling a heavy diaper box up to the crib and then putting a booster seat inside the crib for her to step on so she could climb over the crib railing onto the box. It became a game she looked forward to. (I'm lucky I have an adventurous, independent child!) When she napped, I napped, and I would get up right before my boys got home from school.

That week I marveled at how sensations and pain moved and changed with each day. The previous week a huge chunk of my pain originated at the bottom and side of my lung. I assume that was caused by the pluerodesis. Pain was now shifting upward as my chest wall healed. I still had a significant amount of Rice Krispies above my left breast, as it was clear now that the bottom half of that breast was completely numb and strangely felt like it was 30 lbs. I started experiencing back pain at this point as well. I don't know if this was a result of my poor posture during this time or the surgery itself.

14 days post-op I awoke to find that all three of my incisions had split open during the night. We had been keeping a bandage on my chest tube incision that we changed every day, but hadn't dressed the other two ports as they had been cauterized. Those two ports had opened and oozed everywhere and the chest tube dressing was soaked. Upon further inspection, Tyler marveled that my chest tube incision was now a gaping hole, whereas it had looked like it was healing prior to that morning. He was concerned and asked me to call the nurse. When I got a hold of her, she assured me this was somewhat normal and that as long as the wounds didn't look infected, I was okay. She said that they had to heal from the inside out and that it could take many, many weeks to do so. Just keep them dry and clean, and eventually they would heal. This was one of those moments where we felt like the lack of information a patient is given is ridiculous. They could have let us know this was a possibility when they instructed us on wound care at discharge. We had no idea I'd be living with an open wound for months. Tyler decided to close each wound with butterfly bandages and from then on, we kept all three dressed.

That Saturday I was resting in bed when the all-too-familiar pain and pressure of a pneumo washed over me, only this time it was on the right side. I threw my hands up in the air in disbelief. I knew the chances of experiencing a collapse on the other side were real, but I couldn't bear the thought of it happening so soon. I had read online of other post-VATS patients citing similar complaints only to go to the ER and find no pneumo showed up on the chest-xray. I didn't want that to be me. On the other hand, if it was a collapse, my wounds were still fresh (literally!) and the thought of enduring a Round Two of surgery was more than I could handle. I decided to live in denial and refused to go to the hospital. The pain on the right side lasted into the middle of the following week, so chances were good it was a small collapse.

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