PSYCH! Not Going Home Yet

After a few days of nurses watching me and typical hospital stay experiences I was led to believe I could head home Saturday. The requirements were that my pain be under control, and my heart be draining less than 50 ml of fluid in a 24 hour period. The drain appeared to completely stop draining after Thursday, and my pain was doing better than ever with the discomfort in my stomach, shoulder blades, and chest relieved for the first times since the surgery. However, Saturday morning when I was awakened at four by a heavy man wanting to steal my blood, I recognized very familiar pain. He took the blood as I sat in a fatigued stupor, and upon him leaving I struggled with shortness of breath and the pain in my upper stomach. I went to the bathroom in desperation to relieve the discomfort, wanting to just fall back asleep. I felt in shooting to my shoulder blade, and nausea setting in. It was a mirage of symptoms previously ignored that I now related to the traumatic events of the pericardial effusion that led to cardiac tamponade in the days prior. I informed the nursing staff of my discomforts and settled into an uneasy sleep with the bed sitting upright. Later that morning an Echo cardiogram was scheduled to check the heart before the tube was removed from my chest.

While waiting for the Cardiac Sonographer to be called into the hospital on a Saturday morning, an attentive nurse decided to change out the type of suction system I had, seeing as it was not doing anything and I was having symptoms. It turned out to be just a different type of system, not anything that was pinpointed as broken or defective. When the new system got running and five different nurses figured out how to add the water to the suction compartment, it became apparent there was actually fluid building up on my heart again. After 100 ml of fluid drained off of my heart in just an hour (double the amount needed in 24 hours in order to send me home), the ultrasound was performed. It showed a small pocket of fluid still there, and the tube was left in longer to continue draining a few more days. This gave my heart the time it needed to heal more in the hospital while the Prednisone kicked in and my heart rate adjusted. I was not allowed outside, was craving a hot shower, and started hating the food. I also was not sleeping enough, and the IV in my right arm was hurting from still being placed ever since my ambulance ride five days earlier. I struggled to stay sane, and the Prednisone side effects of mood swings and food cravings were in full force. Thankfully through all of this I had some pretty amazing visitors. My loving church pastor visited me with prayers and well wishes after driving all the way to the hospital just to see me, which made me feel incredibly loved. I also had a long time friend stop by when I was at the hospital alone on Monday, and even went for a walk with me when I was finally released outside. Mostly I had my mother there with me until Sunday night when she had to return home for work the next day. I also had my boyfriend visiting me almost daily, bringing snacks and sanity in the form of chocolate and hugs. He worked hard to learn about every small detail of my medical care and educated himself on what I was going through and how he could help. It was great knowing that even though we had not been together very long, he still was not scared off by the traumatic medical experiences he had to witness. In fact it made us grow stronger, and we grew in our friendship and relationship daily with long philosophical talks and lots of laughs. He lifted me up in multiple ways when I was down. It wouldn't be hard for anyone to feel insecure after experiencing so much, but he concentrated on building my self esteem and reassuring me that I am not defined by my struggles, and there is certainly something special about me worth sticking around for.

By the time the chest tube came out on Monday, I had my pain well controlled, my stamina to moving around was building, I was independently helping myself to the bathroom and kitchen for water, and anxious to get outside. They finally released me that evening for a short break outside where I walked myself to the elevator and out to sit in the breezy evening air with my friend and parents. Upon returning to the room I was able to tape up my arm IV and chest tube insertion site, and take a hot shower. It was a painful shower and I struggled with a pinch in my back and some knee pain for a few hours afterwards, but slept on clean hair and was excited for that. The next morning started with teams of physicians assistants and doctors preparing me for discharge. I had another ultrasound done where I questioned the technician about her schooling experience and how I was interested in the career option for myself. I also had a chest X-Ray, clean blood work, normal heart functions and great vitals. All was ready for me to head out, and my mother's friend was called upon to pick me up. I packed my things, even attempted french braiding my own hair (which raised my heart rate quite a bit), and was ready when my ride showed up to walk myself to the car. I got home and immediately wanted food. Sitting in the same place I had when I left the house by stretcher a week before, I thanked God for the fact I was still alive to see my family and house again. It felt good to eat with my cat by my feet and the busy life of my family swirling around me. I knew what I had just been through was too much to ever fully type for my blog readers, but I would try in the next days to recount the experiences to the best of my ability for other's around me, and also for my own outlet.

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.

Returning to Dartmouth

The space in the helicopter was limited, but I didn't notice as they slid the stretcher into the enclosed area and crawled in around me. The Ativan had kicked in and I felt safe in the hands of the emergency team that was transporting me. Why I had previously begged not to return to Dartmouth, I'm unsure of. I'm guessing I just did not have enough oxygen in my brain to make a sound decision. Obviously I was needing to return to the better hospital, with my own surgeon who knows my case and can save my life, and better care facilities. I wouldn't willing suggest staying at the local run down hospital's emergency department with staff that was untrained in severe cardiac complications, like the effusion and cardiac tamponade I was experiencing. Cardiac tamponade is a complication from open heart surgery that occurs from an excessive build up of fluid on the heart to a point where a chamber collapses from the pressure and is no longer pushing oxygenated blood through the body. It is a serious and deadly condition, not commonly reached in post op patients. I was young for an open heart surgery to happen in the first place, but the complication of the fluid build up in the pericardial sac around the heart is something that can happen to anyone. The concern is if it is internal bleeding and blood is building up, instead of fluid from inflammation, than there may be more serious problems. Either way the fluid must be drained off of the heart to relieve pressure so it can beat normally. A small amount of fluid, under 50 ml, is naturally lubricating the pericardial sac at all times with the body reabsorbing excess constantly. Any more than that affects the hearts natural function, and this is when a special procedure needs to be performed. Pericardiocentesis is a procedure where the fluid is drained off of the heart. It can be performed in trauma cases with a large needle inserted near the bottom of the breastbone, or in a Cathlab procedure where a drainage tube is placed. This is what I woke up to in the emergency room, and thankfully was postponed until my arrival at Dartmouth. The DHART (Dartmouth Hitchcock Advance Response Team) guys were prepared to perform this emergency drainage procedure if my condition worsened during the flight.

Once I was on board and the helicopter took off I was stable enough to twist and look out the window. I saw the lights from the city drifting farther away as we rose in the sky and noticed the sun had set sometime between me rolling out of the hospital and boarding my first helicopter ride. I also saw the frozen lake beneath, and stars twinkling through a clear windy space. The ride was rough but lasted less than twenty minutes, and I managed to fall asleep for the last fifteen minutes. I was happy that they moved me quickly instead of a bumpy two hour ride by ambulance in an unstable position. The air felt like a cool promise upon arrival back to Dartmouth, as they pushed me across pavement to the hospital I had departed days earlier. I knew I was in safe hands, and that my mother was on her way. The first new face I saw was that of my confident surgeon who grabbed my hand and reassured me that I was in his care now and I would be alright. I remember thinking 'I feel terrible, he will fix me though.' He stayed by my side the entire time, as they ran new tests due to LRGH not sending along proper records. I was poked and prodded a million times that evening, becoming used to the abuse on my body. I knew they were just doing their job and I did not complain. At one point I made sure that my blue spa socks, gifted to me the day before by a close friend, were removed from my feet and put in a personal belongings bag. I did not want to lose something so significant to me after one had already fallen off and I begged for it to be found while settling into the trauma room in Dartmouth's ER. Soon after, the DHART team disappeared as swiftly as they had swooped in to rescue me, and I never saw them again. New nurses took over my vitals and making me comfortable as Dr. Discipio decided what the next step would be. I told him to make the decision for me, because I could not think clearly enough to decide what I wanted. He gave me an option, we could try for a Pericardiocentesis in the Cathlab with a doctor that had to be called in to place the tube and Discipio would watch, or we could go to the operating room where my doctor would do his own procedure, of what I'm unsure, and they would sedate me properly. The doctor was called in and an emergency Pericardiocentesis procedure was performed before my mother even reached the hospital, while I lay awake through the entire thing.

The first step was using topical anesthetic around the ribs in the left 5th and 6th intercostal space. The area was painful to numb and I whimpered as the needles dug through my bones. Then a large needle was inserted at an angle into my torso, and I could feel the puncture like a balloon popping as it pierced through the pericardial sac. All was watched with ultrasound and X-Ray equipment to avoid puncturing the lungs or further complications. The needle was retracted leaving a white narrow tube in place that was maneuvered with a metal wire for better positioning. I felt pain in my shoulder blade, typical of having a tube between your heart and it's protecting layer. Once in place they used large 100 cc (or ml) syringes to start pulling fluid off of the heart. They got through 700 ml of fluid and began to slow down, wanting to leave a little fluid to naturally drain with the tube left in place, avoiding another painful complication called Pericarditis where there isn't enough fluid creating further pain. The fluid was tested on a table to my left to make sure it was not bloody or infection filled. It was neat to think the twenty people bustling around me were doing their little jobs so efficiently and quickly and yet so late at night. They were all busy with their tasks at hand and to my left and right were the two most experienced in the room, making sure the job was done right. After the fluid was pulled off, they asked how I was doing. "I can breathe!" I exclaimed in relief. It's amazing how immediate the change was that I felt and I was instantly happy for the procedure no matter how painful it was. Still more work was performed as the drainage tube was covered with gauze and dressing, and I was prepared to be moved to the ICU. On the way out the door yet another angel in disguise took care of me, covering my feet in a warm blanket and making sure my personal belonging's bag followed me to ICU. He held my hand and kept the operating team from sliding me onto the bed hastily, keeping them from jarring me around in my discomfort. I knew I was in a position where I had the best possible care, and all the many angels that followed me along the way made the traumatic experience a little easier. I was cherished as a child, respected as an adult, honored as a lady, and protected as a patient in the care of the medical professionals at DHMC.