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Tuesday, April 22, 2014

ICU Round Two

The bed rolled to a smooth stop as I arrived in ICU after my Pericardiocentesis procedure Wednesday night. Faces bobbed to and from, as a young man assisted with getting my vitals and making sure I was comfortable. The talk spread fast that I had returned, my face familiar to the staff from the week prior when I was recovering from open heart surgery. My first questions were of my mother, curious if she had made it and if she knew I was okay. I had pain in my left shoulder blade, a Pericarditis from the foreign object that now rested next to my heart to drain fluid away consistently. One nurse tried to give me Oxycodone, and I refused to take anything for my pain as I knew it would make me feel drugged and nauseas, and I would rather struggle through the pain. I drank some water and began to let my nerves settle from the experiences of the evening. My surgeon, Dr. Discipio, popped his head in to check on me real quick and then buzzed off to search the ICU waiting room for my mother. He knew the importance of updating her and getting her in to see me in an improved condition after her long two hour car ride in the dark. The nurses took such great care of me in my private room, attending to every need and pressing for me to inform them of any discomforts. I felt almost like a superstar as I was tended to and admired for the unlikely experience I had. My surgeon reassured me that this was a phenomenon experienced in younger patients often, understood and treated effectively, and not that big of a deal. I caught on to his attempt to soothe me and keep me from worrying, however, and heard the rumors of the nurses on how uncommon the situation was. Dartmouth is known for it's low post op return rates, and here I was as one of the youngest patients they had seen and back for round two.

My mother's face rounded the corner of the glass sliding door to my room and relief swept over me. I was happy she could see me alive, able to talk and breathing normally. I had missed her beside me in the helicopter, and while I waited for the procedure to be performed. I had not known what to expect and everything happened so fast that I had to handle it all on my own. I knew I was in good hands but there was nothing quite like knowing I was in her hands. She came beside me and looked me over, understanding the trauma I had just experienced. It was an unspoken moment of understanding, and my heart relaxed at the sound of her voice. Nothing can describe the connection between a mother and her only daughter after being through so much together. It is a concrete bond, where as best friends we respect each other and could never value each other's company more. I have fun with my mother, unlike most teen girls who fight to escape their mother's presence or replace her with boys and best friend's parents. Obviously I am still an 18 year old who has been home bound for almost seven years due to medical problems, and I yearn to have freedom and independence. I love being able to attempt normality, go out with friends or for dates, and drive myself places. I even value going to a doctor's appointment on my own and practicing my ability to speak up for myself. These are great practices to have as a chronically ill child entering adulthood, and I will continue to push for my independence as time progresses. However, nothing will quite encompass the relief of my mother by my side in the ICU that evening. We talked for hours as we drifted to sleep, her beside me in an arm chair, about the evenings events. I asked questions to refresh my memory and make sure my best friend and boyfriend knew I was okay, and told her how much I loved her.

The next morning during shift changes, a beautiful dark haired nurse came in. She was sorry to see me back, but excited that she could be my nurse again. She had requested me upon hearing my name that morning, and wanted to make sure the best care was given to her returning client. I can't even encompass how sweet she was, eager to help and make me comfortable, making me feel loved and overwhelmed with her concern. It was great to know they were taking good care of me, and I was going to be okay. I was under the best surveillance, and not relocated out of the ICU to the Cardiac Intermediate Care Unit until I was ready. That gave me time to snack, keep up on Ibuprofen and Tylenol, use the bathroom and get out of bed, and also have a visit with an RN who acts as an advocate at the hospital. The advocate kept in touch with doctors, requested I be allowed to keep the ICU bed (which I was more comfortable in, it did not adjust every few seconds like the bed I had during my previous stay) after being transferred, she even got a Velcro bra for me to try and make me feel more comfortable. They were anxious to heed our every need and we covered the staff with questions about the condition I was in. By the time I was rolled to the ICCU, I was used to the response from the nurses and LNAs who recognized my pale structure in the bed, returning to my second home. The shock and pity filled the air and I glanced around on my way to my new room to see who I recognized. With too many faces to count I allowed the event to occur, and was maneuvered into a small solo room with a large glass window and private bathroom. I still am convinced I had the best view in the entire hospital for my second stay at Dartmouth. The window overlooked a mountainous scene above the north parking lot with a clear view of the helipad, so I could watch the emergency team come and go day and night. I could also see cloud formations adjust around the mountains and the sun light grow and dim throughout the week. More than the entertaining view, I was pleased to have my own room. A few patients shared rooms with other's, but I got lucky that I was left alone for the most part to rest and recover. At night they let me sleep for multiple hours instead of checking vitals every hour. I was hooked up to telemetry again that watched my heart constantly on a series of screens down the hall. I even got my mother to help me shift to the bathroom and back to the bed with all my gear in tow. I was attached to a chest tube drainage box that hooked on and off of pressurized suction nozzle in the wall. Also, I had an IV running saline slowly to keep my port open for a few days. That was soon removed and I snuck a heparin in the line to upkeep my own catheter from blood clots, which the hospital refused to do.

My stay in the ICCU lasted from Thursday until Tuesday, and was a long tedious visit. I spent a lot of time eating hospital food from a pediatric menu, napping during the mornings, adjusting to changed medications, receiving visits from residents, PAs, RNs, and surgeons who heard about my case, and getting to know the staff. I borrowed a book for a few days from one of the night nurses all about the heart with pictures and explanations. I'm pretty sure my time there was the most educational, as I soared through the book reading about my own heart complications and asking questions to the other nurses about the heart's functions. One of the LNAs was working in the evening and explained thoroughly the electric pulses of the heart and how Lyme can even affect the rhythm. After Thursday and Friday in the hospital, I was ready to head home Saturday. I clung to the possibility of being able to sleep in my own bed. After the pressure was removed from the heart I could finally sleep laying down, move around more comfortably, and my cough had even resided. My antibiotics for Lyme stopped on Friday, and it was decided that the port would be removed the following week because of it's cause in my heart problems and throwing clots.
Robbie visited me almost daily during my stay, bringing ice cream and cards to keep me busy!

 Now that the antibiotics had stopped, and the antifungals stopped, I had to concentrate on the new medicines prescribed to me. I was put on a Prednisone six week taper which was mandatory for reducing the inflammation around my heart and the fluid production that caused my complication. Most Lyme patients can not do steroids, being that they kill your immune system and let Lyme run wild in your system. This is the only time when needing steroids is more important than worrying about my symptoms right now, this is life or death. It's the exact reason I once hesitated listing steroids as a medical allergy, knowing that if there was a trauma situation where steroids were needed and I was listed as allergic it would affect a life or death situation.

My mother and I were not happy with this change, but I made the emotional step to accept my situation and let God handle the rest. I informed my specialist I wanted to take a medication holiday while we addressed the heart recovery, have the port pulled (which was going to happen in a month upon losing insurance coverage anyways), and reduce the number of toxins on my body as I recovered from the two weeks prior. My body had been put through a lot, and I needed to allow it time to return to a normal operating level before reassessing the treatment situations for the Lyme Disease which has become the least of my worries lately.

My heart medication was also increased to control the heart rate and blood pressure levels, and it took about three days for that to settle in and begin working smoothly. I started walking around the hospital more to stretch my legs, and begged for the chance to breathe the sunny spring air I could see outside my window, teasing me for freedom. Within days I had finally began losing an impressive amount of water weight, fifteen pounds falling off and peeing like a racehorse daily. My feet looked normal again, and other than night sweats I was feeling pretty good until Friday night, when again discomfort overcame me, and my hospital stay was expanded.

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