Addie's Story: Parent's Letter Project Lung disorder- Addie's mom

On Monday, June 7, 2010 we took our daughter Addie in for a scheduled lung surgery to remove the upper portion of her left lung at the Joseph E. Robert, Jr., Center for Surgical Care. We planned and prepared for this day for several weeks and thought we knew exactly what to expect before, during, and after Addie's procedure. Before that day, there was no family more prepared or confident in the decision to have this surgery than ours. Now as I sit here typing this letter I can honestly tell you I was the most naïve and unprepared parent going into surgery. In meeting and discussing with Addie's surgeon we were told it was a three hour procedure with a two to five day recovery in the hospital, and to plan on being there for three days. We were completely confident in her surgeon and Children's National for her care. I never prepared myself or allowed myself to think about the worst case scenarios. I am an extremely positive and patient person, and I try to incorporate that attitude into every aspect of our life and family.

Addie's surgery lasted for almost four hours. She did great and her surgeon was confident that the worst was behind us and the procedure was a success. We were so excited to see her and could not get back to the recovery room fast enough. I was not at all prepared for what awaited us. She was extremely disoriented and barely awake. She was in a considerable amount of pain, yet moving, and was not aware of her surroundings. She was receiving oxygen through a mask to help her breathe. The nurses were wonderful and got her pain under control quickly. They were very attentive to her and us. They explained what each monitor represented and what the numbers were likely to be and how they gauged Addie's condition based on these readings. I was immediately able to hold her which made her and I feel 100 percent better. She found comfort in my arms and I found comfort with her there. We were in recovery for a couple of hours and then we were taken to our hospital room in the Surgical Care Unit. There we met our new nurse, Hollis, and became acquainted with our new home away from home for the next few days. We transferred Addie to her bed where she could rest more comfortably and get some rest. She was still pretty disoriented and definitely feeling the effects of the surgery and anesthesia. The next 24 hours were probably the most difficult of my life. I found myself scared by the condition of my little girl, the monitors and tubes she was attached to, and my surroundings. I felt completely inadequate as a mommy because I couldn't make my little girl all better. My husband and I took turns staying awake throughout the night by her bedside. I watched every breath and every move like the day she was born.

The next morning brought with it a new day and hope for healing. Addie's pain was under control and she was much more alert. She was still not moving around a lot but that was expected with the chest tube that was in place for drainage. The surgeon came by to check on her and was encouraged. Everything was as it should be and we were on the right road to recovery. Tuesday afternoon they turned her Pleur-evac (drainage box) from active suction to water seal. This was the next step to having the chest tube removed and Addie going home. She was certainly not back to her old self yet, but appeared to be getting there slowly but surely. The nurses were wonderful and it was a great comfort that the doctors did rounds twice a day. I always felt like they were on top of her condition at all times. There was also a physician's assistant that checked on her periodically and was able to answer any and all questions that arose throughout the day. Tuesday night we slept much better, but still not great. I am not convinced that there is such a thing as a good nights sleep in a hospital. Between worry and the constant noise of the monitors and constant check-ins of the nurses, it can be difficult to get quality rest. We always tried to sleep when we could, whether it was a quick nap during the day or taking turns sleeping next to her in the chair at night. Rest is as important for you as much as it is for your child.

Wednesday morning brought with it good news…the chest tube was coming out and if her afternoon chest X-ray looked good we could be going home. We were very eager. Although the actual removal of the chest tube was a bit traumatic for Addie, it was really quite painless. The worst part was definitely the removal of the tape that held the tube and dressing in place. The actual chest tube itself was out before we knew it. This really seemed to be a turning point for Addie. She seemed to be returning to her old self at a much quicker rate now that the chest tube had been removed- exactly like the doctors said she would. Everything appeared to be right on track. But, I just could not shake my intuition as a mother that Addie was not yet ready to go home. My husband was anxious to escape the four walls of our hospital room and be home with our baby girl and our 16-month-old son who we were missing terribly. When the doctors came by I explained my concerns and explained we lived nearly three hours away. As anxious as we were to go home, we did not want to go until we were 100 percent sure Addie was ready. They completely understood and said we could stay the rest of that day and head home in the morning. I learned very early that no one knows your child better than you do, so always trust your instincts and never hesitate to ask questions or voice concerns. You do know best.

When the doctors returned for their evening rounds, they explained that they had seen a small air space in Addie's chest X-ray and they would need to keep her overnight and do a follow-up X-ray in the morning to make sure it had disappeared or at least not grown in size. That night we enjoyed time in the playroom, walking to pick out our meals from the buffet, and lots of wagon rides. Whenever you can get out of the room take advantage of it. It clears your head and makes a world of difference. I also would recommend taking walks outside the hospital if you can. Even if you are walking only to get meals at the cafeteria, take breaks. A short walk can bring a whole new outlook to any situation.

Thursday morning came and the difference was night and day. My Addie was back to her old self and I could not have been happier. She was dancing and singing and eating everything in sight. I quickly began packing up the room and preparing for our departure. I was mentally and physically ready to leave. They performed her chest X-ray, which I was sure was just a formality, there was no way anything was wrong. After the chest X-ray, they made Addie "NPO" (no food or drink) as a precaution because if there was an air leak they would need to re-insert the chest tube which would require another surgery. As we waited for the good word, time seemed to stand still. Although we had not gotten the results yet, I did know one thing for sure- if Addie's surgeon came through the door the news was not good. No sooner had that thought entered my head when her doctor walked in and we knew the chest tube was going back. It all happened so quickly it is honestly still slightly blurred in my mind. The Operating Room (OR) was ready for Addie and we had not even signed the consent form. We were now thinking the worst, which we had not allowed ourselves to do before this point. We thought that we had come so far and now we were headed back to square one. I was not sure I could handle it again. The recovery from the first surgery had been so intense. To make an already awful situation worse, it was our wedding anniversary and we were spending it in the hospital as our daughter prepared for her second surgery in four days.

Now it's time for the good news. The second surgery was a breeze compared to the first. It was done and over before we even had time to call family to tell them what was happening. Addie woke up very easily refusing pain medicines, demanding to go back to her room to watch Finding Nemo and hungry for a grilled cheese, apple juice, and macaroni and cheese. Happy anniversary to us!

Our journey at Children's National came to an end Saturday, July 3, 2010, after a mentally and physically exhausting 28 days. Our days involved lots of waiting and chest X-rays. We did our best to make the best of the 6x6 area she was confined to by playing lots of games and doing lots of coloring and crafts. It kept her mind and ours off the situation. We also did our best to make our hospital room colorful and as comforting to Addie as possible. We hung lots of cards and pictures and surrounded her with lots of stuffed animals, dolls, and blankets from home. Addie had two more subsequent procedures. She developed an air leak that required insertion of an additional chest tube called a pigtail in conjunction with her original chest tube. Her fourth procedure was one that we were told would never happen. They needed to perform another surgery to find the air leak.

I have to compliment our surgeon at this point, Randall Burd, MD. Even though he was coming to our room to tell a family (who had already been through so much) that the one thing he told us would never happen was happening. He did it with unwavering confidence. His confidence was the rock I leaned on and allowed me to be strong and pass that strength and confidence on to our little girl.

One thing to remember as parents going through a medical difficulty, is that no matter how long your stay may be at Children's National or any hospital, even if it is planned or unexpected, you will get through it. The more calm and positive you can stay the better. It's easy sometimes to lose your patience and become angry with the doctors or any member of the staff, but you have to remember it is not their fault. Medicine is not an exact science. Everyone heals differently and not at the same speed. Let the doctors, nurses, and staff do their jobs. Be informed, but know they are doing their best. Even though each day may seem like a lifetime to you, it is equally as difficult for them as caregivers. It goes a long way to put yourself in their shoes for just a moment. Our days and nights were filled with many ups and downs, and even though our lows were the lowest, our highs were the highest. We always tried to stay positive and tried to never get ahead of ourselves or the doctors. We took it one day at time. We trusted our surgeon completely and I can not say enough good things about him and his staff. They started out as complete strangers and became our home away from home family. They always answered our questions and made us feel like we were important. I always felt like they had all the time in the world and that Addie was their most important case.

Please remember no question is a bad question. The more you know the more confident you feel. You are your child's parent and number one advocate. I had moments of doubt or moments filled with lots of uncertainty, but I can say with complete conviction that whenever I spoke with our surgeon or a member of his team my mind was immediately put at ease and within minutes I was reminded why we chose our doctor and Children's National. We were exactly where we were supposed to be and Addie Mae could not have been in better hands.

I cannot say enough wonderful things about this facility. I know for me and my family we would never consider going anywhere else. The facility is amazing and so are the people who staff it. From the cafeteria staff to the nurses and surgeons they truly take pride in their work and the children they are taking care of every minute of every day. They were always willing to go the extra mile, no matter what that was, and I am sure this is true for all the families they serve year after year day after day. Thank you Children's National!

Sincerely,

Addie Mae's mommy, Jamie

Treatment Team

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