Sam knew she was getting sick when she woke up on Monday morning. By that evening, she felt miserable. She had a high fever, sore throat, coughing, and she was aching all over. She called the clinic to make an appointment first thing Tuesday morning. When she went in to see Dr. H, he told her she probably had the flu and she should go home and rest, drink plenty of fluids, and take Tylenol or Ibuprofen as needed. He did not do an influenza test, which takes about ten minutes. A positive test would have indicated giving her Tamiflu, which is an antiviral medication that decreases the severity of the virus and prevents complications that can arise from the influenza virus. Tamiflu can be given to any patient as long as it is started within the first 48 hours of the onset of symptoms. Sam was seen by Dr. H. 24 hours after her first symptoms started. Typically, testing for influenza is recommended when there are a high number of reported influenza cases in the region. The county where Sam lived was ranked as a high number of reported cases of influenza for the two weeks prior to Sam getting sick.
Wednesday came and she continued to feel awful. She was so eager to get better because she had plans with her friends to go to Iowa City bar hopping in a bus and she didnít want to miss the party. By Thursday, she was feeling worse. Her temperature was still high and she started vomiting and having dizzy spells. Her mom decided to take her back to the doctorís office in the morning. So, Friday she and Barb went back to the clinic and saw Dr. D this time. He noted faint rales when he listened to her lungs but did not order a chest x-ray or any blood tests. He told her she probably had influenza but did not feel she needed to be tested as it was not going to change her course of treatment. It was too late to give her Tamiflu as the 48 hour window had closed so he sent her home with an antibiotic. That night, she was still vomiting and she started having chest pain.
By Saturday morning, Barb noticed that she had swelling around her eyes and she was still vomiting and complaining of chest pain and dizzy spells. Barb was really getting worried so she called the clinic to make an appointment. She spoke with Dr. R, who was the physician on call and explained the six days of her illness. She told him that she had been running a high fever for five days, vomiting for two days, she had puffiness around both her eyes and they felt like they were going to pop out of her head, and she felt like someone was sitting on her chest. Dr. R. told Barb that she did not need to come in to be seen and these were normal flu symptoms. He said that if Sam was not better by Monday, which was two days away that she should bring her back to the clinic. Barb was supposed to go out of town that evening but was going to cancel because she was worried about her. Sam wouldnít hear of it and told Barb to go and have fun. Sam was home with Russ, Samís step-dad. The dizziness was getting worse and she couldnít stop vomiting. Sam didnít have the energy to keep going to the bathroom so she lay down on the bathroom floor. At 10:00pm, Samís 17 year old sister came home to find Sam lying on the bathroom floor and Russ sleeping in his bedroom. Jessica called her mom and told her that Sam looked really sick and she wanted to take her to the hospital. Russ woke up and started yelling at Jessica, stating Sam was fine and she shouldnít have bothered her mom. Barb didnít listen to Russ and called her sister Lorraine who lived close by and asked her to take Sam to the Emergency Room and she headed home from Des Moines.
When my phone rang at 1:30 A.M. and I saw that it was my sister Lorraine, my first thought was that something happened to my mom. After all, her emphazema makes her the unhealthiest person in the family. When Lorraine said Sam had a heart attack and was being rushed to the University, I jumped out of bed. She explained that she took her to the hospital earlier and her blood pressure dropped and the EKG showed a heart attack. I told her I was on my way and I grabbed the nearest clothes I could find. I woke up my thirteen year old daughter and told her to get dressed and be ready in three minutes if she wanted to come along. She too jumped out of bed.
Once we were on our way, I called my mom to see what was going on. After all, Lorraine is not exactly known for her accurate fact telling skills. All my mom knew is that Sam had been sick for six days and they thought she had influenza. Mom didnít know much more than Lorraine so I decided to call my other sister Barb, who is Samís mom. She was riding to the hospital in the ambulance with Sam. Thankfully she answered but she was still unsure of what was going on. When I found out the Paramedic driving was an old co-worker of mine, I asked to speak to him. Jamey told me that she came in with a high temperature, nausea, vomiting, and dizzy spells. He said they thought she was dehydrated but when they gave her a fluid bolus, her blood pressure crashed (this was due to the stress on her failing heart as it was not strong enough to handle the extra fluid). They did an EKG, which showed signs of a heart attack but they were wondering if she had a pericardial effusion (fluid around the heart).
I couldnít believe what he was telling me and that he was actually talking about my niece. She is only 21 and there is no way this could be right! However, I told my sister that I would be there as soon as I could. She sounded calm on the phone so I was not going to panic. After all, worst case scenario, she would need a pericentesis to remove the fluid around her heart and IV antibiotics). I could only imagine the stink Sam is going to throw at the mention of a needle in her heart. She hates needles! And I cannot imagine how freaked out Barb is going to be. They are definitely going to need to give Sam something to sedate her!
When I arrived at the hospital at 2:30am, I found several family members in the waiting room, including my mom, Lorraine, my cousin Tina, and Samís biological dad Mark. I was surprised to see Mark there. He had only been talking to the kids for the last couple years and I did not know he and Sam had gotten that close. Last I talked to Sam about Mark, she was still angry at him for walking away from them so many years ago. Nobody had an update and they were all waiting for Barb to give them some information. Barb came out about five minutes later. She said they were just settling her in so I asked if I could go back. Barb said to go ahead and told me that Barry (Barbís ex-husband who adopted the kids after Mark walked away) was back there with her.
When I walked in, I was very shocked at what I saw. Sam was lying there on the cot with her hair in her face. When I brushed the hair out of her face, I saw her pale skin and her eyes had puffiness all around them. Why does she have periorbital edema? I told her hi and asked her how she was feeling. She said, ďLike shit. Can you make them give me something to drink?Ē I told her that they probably wanted to wait until they knew for sure what was going on. They probably donít want her to have anything by mouth in case they needed to do any procedures if she did have fluid around her heart. I kissed Sam on the forehead and turned to the nurse. Her blood pressure was still low with a systolic in the 70s and her heart rate was elevated in the 120s. Her oxygen level was 97% which was a good sign. I asked the nurse if I could see the EKG and whatever lab work they had. She did not have anything new but she showed me what was sent from the ER in Osky. Her EKG looked terrible, showing signs of ischemia in several different leads. Her white blood cell count was not too elevated, which was consistent with a virus. I asked the nurse what the plan was and she said the Cardiologist was coming to do an Echo (an ultrasound of the heart). Since Sam was still vomiting, I asked the nurse when she had medicine last for her nausea/vomiting. She went to check on it and came back with more Zofran.
Sam was complaining of feeling achy all over and she wanted apple juice. All we could give her was ice chips, which is what we did. Sam would sleep for a few minutes and then wake up vomiting. I was actually surprised how well she was handling feeling so sick but she said she had been like this for days. Barb came back in the room at the same time the Cardiologist arrived to do the Echo. I watched the Echo over his shoulder and could recognize the fluid around her heart. The cardiologist said it wasnít a lot of fluid but he needed to finish the Echo to know for sure what needed to be done. I kept asking questions and got the impression he wanted me to leave him alone so he could do his job (). When Barb started asking me to explain to her what was going on, I took her into the bathroom in the room so Sam couldnít hear me. I didnít want to freak her out by talking about needles and such. I explained to Barb that if the fluid around her heart was large enough, they may have to put a needle in there and drain the fluid. How do I explain this to her in words that wonít make her panic? These are scary words to anyone, especially the mother of a 21 year old patient! Barb looked scared but stayed calm, which impressed me a lot. I know inside I was freaking out. But all this is manageable and I needed to focus on the medical side of things and not think about the fact that I love that person on that cot.
The cardiologist was still doing the Echo when the nurse brought Samís lab results for me to review. The cardiologist looked at me quizzical and I explained that I was a nurse and had actually worked at this hospital several years ago in the cardiovascular intensive care unit. This way he knows that he can talk to me like a medical professional and that I am watching him to make sure she was getting the best care that I knew she should get. The nurse asked the cardiologist if he wanted her to start making arrangements for an ICU bed for Sam. He said she could probably go to the regular cardiac floor. I walked out to the hall with the nurse and asked her if she really felt she was well enough to go to the floor and told her that was because I will not be leaving her bedside if she goes on the floor. After all, she is a 21 year old girl! She agreed but reassured me that the cardiologist was great and if he felt she was well enough to go to the floor, then she trusted him. Well, that was a good sign. He must not be very concerned if he thinks she will be fine on the regular floor vs an ICU bed. But when the nurse brought me her labs to see, I was shocked. Her troponin (which is an enzyme that is an indicator of heart damage or ischemia) was 0.45. This is the highest I had ever seen, even in patients who had a severe heart attack. It also meant that this didnít just start today as this test has a delayed result and it had to have taken several hours if not days to reach this level by this time. This did not make sense as it showed too much ischemia for a simple pericardial effusion (fluid around the heart). I focused my attention on the cardiologist because there had to be more to the story than this. He was very quiet as he was focusing on the Echo. As I was looking over his shoulder, I noticed the spot where it stated her Ejection Fraction (EF, which is the percent of her heart that is actually working). I asked him what her EF was and he quietly said 25%.
It was at that moment when I separated from being Aunt Laura to the nurse. It was then that I realized how serious this situation was. I have seen 80 year old men with EFs greater than 25% after having a massive heart attack! Sam was critically ill. It doesnít get more critical than this! Barb must have read something on my face because she asked me what that meant. How do I tell her that her babyís heart was barely working? I explained to her that her heart was not working very well right now but also tried to reassure her that she is in the best place and they will figure this out. My head was ready to explode with the reality of what was happening to my baby niece. I needed to get some air so I told Sam and Barb I was going to smoke and I would be right back. I went outside and my mom joined me. I knew she followed me out so I could fill her in on what was going on. Everyone relied on me to explain things whenever it came to the medical stuff. I explained to her that her heart was not working very well and my mom was shocked and wanted to know what that meant. I was already exhausted at the thought of what was to come. I wanted to be gentle with her and reassure her but I also needed to get back in there to monitor the situation. I couldnít miss anything medical so I was sure to be on top of everything that was about to happen. I told my mom that she was really sick and that this was very serious.
When I got back in the room, I did my first full assessment of Sam. Her blood pressure was still in the 70s and her heart rate was around 120, oxygen level was still good, skin was pale, cool, and dry. She was continuing to vomit every 10 minutes even though she did not have anything to bring up. She would wake up to ask for ice or her emesis basin but would sleep in between. Her IV was not connected so I asked the nurse if she should be getting fluid. The nurse went to check with the doctor and came back to turn the IV fluid on. She informed me then that Sam was going to be admitted to the CVICU, which is the same unit I worked in. I cannot believe I am going back there with Sam as a patient. All the patients there were really sick. I started remembering all the people I saw die in that unit or came very close to it. Stop it Laura! You canít think like that, FOCUS!
When they took Sam up to the ICU, we were going to take turns being with her as they only wanted a few people in there at a time. I stayed with her the entire time because I was the medical translator. As part of me was scared to death for Sam, the nurse part was glad because I knew I would be going insane sitting in the waiting room and not knowing what was going on. It is a sense of control to a point, one that I can lean on that the rest of the family did not get to have. I cannot imagine how terrified Barb and everyone else feels, not knowing what things meant or what was to come.
Several residents and interns came in and asked questions as to what lead Sam to this point. Barb was busy talking to them and answering all their questions for the 100th time so I focused on Sam. She was complaining about her back, neck, and legs hurting. She asked me to rub her back so I asked the nurse for some lotion (patients always enjoy a rub with lotion better). While I was rubbing her back and neck, Alyssa (my daughter) came in to see her. I knew she would be feeling scared and uncomfortable so I tried to give her something to do to help and I asked her to rub Samís feet and legs while I rubbed her back and neck. There we were, the two of us, rubbing Sam. I could see it made Alyssa feel better and I was able to take care of her and Sam at the same time.
The doctors came back in less than an hour later. It was probably 8:00 am by then. They told us that they wanted to put in a Swan Ganz catheter (which is a catheter that is threaded directly into her heart and they can do more accurate measurements of pressures and exact heart function) in Sam so they can get a better picture of what was going on with her heart. I remembered all the sick patients that I took care of there that needed a swan and Samís level of severity moved up another notch. They must be really concerned if they felt this was necessary. The doctor explained to Barb what exactly it was and why they needed to do it. She looked scared to death. I wondered if she actually realized how serious this was. I tried to act like it was not that big of a deal and that it was what was best for Sam. That seemed to calm her a little (or she was doing a very good job at hiding her fear). When we told Sam what they wanted to do, she said no. She said she just wanted some apple juice and to go home. I explained to her that she was really sick and they needed to do this so they could help her. She finally agreed. Barb was worried about how Sam would handle the procedure so the nurse offered to let me stay with her during the procedure and Barb felt better about it then. I knew what was coming, I could see it in my head. Would I be able to see them do this to my niece? I knew I didnít have a choice. Barb needed me in there so she knew Sam wasnít alone and I needed to be in there so I knew Sam was ok and I could help to keep her calm and not move when they were putting the catheter in her neck. I asked the nurse to see if she could give Sam something to keep her calm. She talked to the doctor and then gave her Fentenyl to help her rest during the procedure. Sam almost immediately fell asleep. I put on a surgical gown, hat, and mask and they placed a sterile drape over Samís head and chest. I put my head under the sterile drape and rested it on the pillow with Sam so we were face to face. I put my hand on her forehead so I could stop her from moving her head during the procedure. I reassured her that it will not hurt very much but also stressed the importance of staying still. I explained to her that she will feel a small poke when they numbed the area but she would only feel pressure and movement after that. The meds were working great and she was still sleeping when they got started. Although I had the sterile drape over my head, there was a plastic window around her neck where I could see every move they made. This better not be an intern and he better know what he is doing or I will have to hurt someone. This is not the time to be teaching a newby while my niece is lying here. Stop it Laura, focus on the medical! Samís eyes were closed the entire time. She grimaced a little when they gave her the local but she laid completely still while I watched them take the scalpel and make the incision. I saw her blood start to run down her neck. I stroked her forehead and told her she was doing a great job and how brave she was being. It was like I was two totally different people at that moment. I was Aunt Laura helping her through this and reassuring her yet I watched every move the doctor made while they were placing the Swam catheter into her heart. I could not see the cardiac monitor during the procedure but I knew there was a risk of arrhythmias or the catheter going through her vein or even puncture her heart. So I watched the nurseís face while she was monitoring Samís rhythm. So far so good. Itís weird as a nurse, I can read the nurseís mind by watching her watch for the same things I would be watching for. It was like I knew everything that was going through her mind, what she was worried about, what she was preparing to do if things went wrong, what the next step was during the procedure.
When everything was done and the nurse was cleaning things up and preparing to get the first readings from the Swan, I went and got Barb to tell her she could come back in. I made sure all the blood was cleaned up as I know that would freak her out. Sam was still sleeping when Barb came back in and I told her how good she did and reassured her that Sam barely flinched in the beginning and slept through the rest. I think that made Barb feel better, at least that was what I was trying to do. While Barb gently talked to Sam and stroked her hair, I was watching the nurse evaluate the readings from the Swan. She looked concerned and focused. I tried to read the results myself, I had to admit that it had been a long time since I had done this and asked the nurse to give me a refresher course on what all the numbers meant. She told me that Samís cardiac Index was only 0.9, which showed she was in worse heart failure than the ECHO showed. I was trying to process this new information but a voice in my head was screaming, ďAre you kidding me? This canít be real. This is a healthy 21 year old girl!Ē
While we waited for the doctors to give us some more information and a game plan, I called my husband Clay to let him know what was going on. I asked him to come up to the hospital as I knew this was going to be a tough day. I thought maybe he could be here for me since I could not show anyone in the family what was really going on in my head. I had to stay calm and optimistic. If I let them see how freaked out I really was, they would freak out too. I wanted to protect them from the reality and severity of the situation. I told them what they needed to know to get through the situation at hand but sharing with them how dangerous this situation might end up would not help anyone. I knew things were very critical but telling my family made it real. If I kept it in my head, then it was just another day at work but if I told them the possibilities, then it would make it real that Sam was the patient. I could not acknowledge that this was really Sam and keep things together to help Barb and the rest of my family in addition to staying calm to absorb all the medical information that I was going to need to translate. Clay was the only one I could share all my thoughts, fears, and knowledge with about the situation. Plus, I needed him to keep an eye on Alyssa as I needed to focus on the situation at hand.
The doctors finally came in and explained to Barb that her heart was very weak and was not pumping as well as it needs to. This was the reason for the vomiting as her stomach was not getting the blood flow it needed. The doctors stated that they wanted to put a balloon pump in Sam to give her heart a rest and a chance to recover. There goes that voice again screaming ďAre you kidding me?Ē This is generally done when they are worried that the heart will give out soon because it is too weak to keep going. This is typically the last effort before the heart fails completely. It was at this point that I started thinking about the long term effects of the situation. If she even survived this, there was a good chance she would need a heart transplant. She would be one of those sick and feeble young kids who has to stay in the hospital for months waiting for someone to die so she could live. She was pissed about staying in the hospital now and she had only been there for 12 hours! It was really hard to come up with the words to reassure Barb at this point but I kept going. I reiterated to her what the doctors said about giving her heart a break. I told her that this was the best thing for Sam, as it would help her to get the blood to where it needed to go and she could hopefully start to get better.
Her Influenza B test came back positive so at least we knew what was causing this, or at least what started it. If we can give her body some time to recover from this virus, maybe she can start to get better. She may have irreversible damage to her heart, but at least she would survive.
I asked Barb when she had urinated last and she said it was before she went to the ER, over 12 hours ago. I told the nurse I was concerned that she hadnít urinated and after talking to the doctor, they agreed that she needed a foley catheter because she was too weak to be getting out of bed to use the bathroom. Sam wasnít happy about it but she did agree and the nurse again offered to let me stay with her when they did it. Barb and the others went out to smoke while I held Samís hand while they put the catheter in her bladder. I thought about making a joke like glancing down at her vagaga and saying, ďWow, that looks a lot different since the last time I saw itĒ but decided not to as she was too sick to appreciate my humor.
When the foley was in, the nurse got busy getting Sam ready to go to the cath lab to have the balloon pump put in. Things were moving very fast and they were ready to take her back before Barb was back from her smoke break. I called her and told her that they were taking her back and to hurry so she could see her before she goes. The nurse seems very impatient to get going. Does she know something that she is not telling me? There is no time to ask because I recognize the urgency in her behavior and I just want her to take care of Sam. I will ask questions later. I held Samís hand as they were wheeling her out of the unit and down the hall. Sam had been sleeping most of the time but when I asked the nurse to wait a few more seconds for Barb to get back, Sam looked up at me and said, ďItís ok Aunt Laura. Just tell mom that I love herĒ. I kissed her forehead and told her I loved her and let go of the cart to allow the nurse to take her beyond the point that family is allowed to go. Just then the elevator doors opened and I grabbed the cart to stop it and yelled for Barb to run. I could see that the nurse was going to argue with me but changed her mind and let Barb talk to Sam. I do not know what she said to her or what Sam said to her mom. I stood back far enough so I wouldnít hear it because it made my job as the nurse a lot easier (remove the personal part of the situation).
I think that is when Clay and Jake showed up. I took a few minutes to fill him in on what had happened so far. Since the nurse said it would take about 45 minutes to do the procedure, we all went outside to smoke. Clay and the kids stayed in the waiting room. That 45 minutes felt like hours while we waited for her to come back and everyone was on edge so I moved into my other family role, the entertainer. Iím not sure how my brain comes up with the stuff but it never fails me. I did my best to be funny and keep people from thinking about what was happening.
It seemed like forever but Sam finally came back. Barb, Barry and I went to the unit to see her and she had been placed in another room. Even though the room was bigger, it seemed smaller because of all the equipment and people that were in there. The atmosphere was not like I had expected it. The nurse still looked concerned and when I looked at the monitors, her blood pressure was no better. Sam was asleep but she didnít look good to me so I asked her who I was to make sure she was still with us mentally. She barely opened her eyes but she did whisper, ďAunt LauraĒ. I said good and kissed her on the forehead. While Barb and Barry were at the bed talking to Sam, I talked tone of the interns at the door of her room. I told her that I thought she would be doing better already but it did not look like she was any better since the balloon pump was put in. She said she thought she would be doing better too. I did not say more but I could see the confusion and concern on her face.
I found the heart failure doctor in the middle of all the chaos and pulled her aside to try and find out what was going on. I was not feeling good about the scene that I was seeing around Sam. Barb saw me talking to Jen (the heart failure doctor) and she left Samís bedside to come and find out what was going on and Barry followed. As Jen was explaining things to Barb (I honestly wasnít paying attention to what she was saying as I was watching the activity in Samís room).I heard someone say the word intubation and I went back into the room. I asked the nurse from before what was going on. I could not see Samís face at this point as there were too many people between us but she told me that her respiratory status was deteriorating and they needed to intubate her to protect her airway. I looked in the nurses eyes and it was like she was talking to me without words. She was telling me that Sam was circling the drain.
I wanted to run to Sam and hold her and beg her to fight harder! But I didnít have time because Barb was watching me like a hawk (it was like I was reading the doctors and nurses faces and Barb was reading mine) and she could tell what was going on. The heart failure doctor was trying to explain to Barb what was happening but Barb was staring at me and I could see it in her eyes that she wanted me to tell her what was happening. I love Barb so much and I wanted to shield her so much but I knew that I couldnít protect her from this so I went to her as a nurse. I explained to her that Sam was not breathing as well as she needs to be so they were going to put a tube in to breath for her. I saw Barbís eyes roll up and her body wanting to give out so I grabbed her arms and looked her in the eyes and told her that its best to do this now instead of in a situation where they have to. Itís to protect her breathing. I think at that point Barb was just taking the information in one moment at a time as her brain could not process more than that. We were standing just outside the room and I was the only one who could see in the room. I couldnít see Samís head which is good because I did not want to see them put the ET tube in. I saw the nurse make eye contact with me and gave me a nod that it was done. I turned to Barb to tell her they got the tube in and it was done.
It was at this point that I heard the words that will haunt me forever. I heard someone say, ďWe lost her pulse. Starting chest compressionsĒ. Is this really happening? This canít be real!!! I turned to Barb and tried to move her away from the door of Samís room. She was trying to read my face again and asked me what was going on. I could see her begging me with her eyes. I did not know how to say these words to my big sister but I knew she was waiting; pleading for me to tell her what was going on. I took a deep breath and told her they were doing CPR. I could see the panic in her face and she started to run for Samís room. I grabbed her by the arms to stop her and told her she did not want to go in there. She was pushing against me like a mother who needed to go and pull her baby away from the danger but I knew what was going on in that room and how those images have haunted me even when I did not even know the patient. I did not want Barb to have these images in her head, not now or ever. I begged her not to go in there and told her she did not need to see that. She hesitated for a few seconds that felt like minutes and I could see the internal struggle going on in her mind. She was debating on whether to listen to me or plow me over and run to her baby. I just waited as she was staring me down deciding what to do. Finally she grabbed me by the arms, looked hard into my eyes and said, ďThen get your ass in there!í as she pushed me towards the door. I could see out of the corner of my eye that Barry and someone else were taking her out of the unit.
As I started walking into the room, I was waiting for someone to stop me and tell me I couldnít be in there and I was prepared for a fight. I was not going to leave Sam alone during this. But nobody said a word to me as I made my way to the head of her bed and wedged my body between the equipment and the cot. I was taking in the scene around me as I stroked her hair and kissed her forehead. I was telling her to fight harder and not give up. She had so much more to do and she couldnít leave us. We needed her and we loved her SO MUCH! Please Sam, stay with me. You are stronger than this. You can beat this. You do not have all that spunk in you for nothing. Please Sam. I canít let you go. SAMMYMANTHA, you will not leave us! Stay with me baby girl PLEASE! When I was talking to her as Aunt Laura, I was only looking at her face from her eyes up. The other part of me was watching the medical scene in front of me. I heard them say she was in PEA (Pulseless electrical activity, which means she has electrical activity going on in her heart but it was not beating). This always has an underlying cause and the only way to reverse it is to fix the cause. I watched them doing chest compressions as they took turns and switched off every few minutes and I thought about how their abs were going to burn tomorrow. I noted all the ACLS meds they were giving her and watched them stop chest compressions every couple minutes to check for a pulse. I felt the same way I always did when we stopped to check for a pulse when I was working on a code (a second of optimism followed by a refocus of what needed to be done). I asked the nurse doing the chest compressions if she thought maybe her pleural effusion had gotten larger (the fluid around her heart. If this fluid had increased, it could be squeezing her heart and not allowing it to beat). She said she didnít know but a few minutes later, someone brought in the Echo machine and checked the fluid level. They said it had not changed. I continued to beg Sam to keep fighting but I could see this scene in my head hundreds of times from my past. Everything we were trying was not working. This was the time we start thinking in our head that we are going to have to stop trying and admit that we could not save the patient. It is at this point in the code that I start thinking of the family and what we are going to say to them. I tried to imagine how I was going to walk out of this room and tell my sister that her baby has died. I cannot think like that. It was at this moment that my brain decided that it wasnít really Sam. This is just a bad dream. A test if you will of how well I can turn that switch and separate from the reality of the situation at hand. I continued to talk to Sam but I wasnít really there. I asked how long we had been going (35 minutes) and was wondering at what point they were going to call it (stop the code and pronounce her dead). I heard them talking about ECMO and I asked what that was. Someone explained to me that it was a heart-lung bypass machine. I asked if that would do any good at this point and they said it will keep her blood flowing and buy her some time. I didnít understand how that would work if she couldnít come back from this code but I just watched and waited.
About ten minutes later, a group of people came and I heard someone say the ECMO team was there. The nurse told me that I would need to leave the room at that time as there was not enough room for them to do what they needed to do. I kissed Sam on the forehead and told her I loved her so much and I was not going to be far away and I promised I would not take my eyes off of her. I went and stood just outside the door in the middle of about ten other people who were watching. There was about ten more people in the room working on Sam. They were still doing chest compressions as the ECMO team prepped her for the procedure. People were running around trying to get supplies and equipment. I heard someone say they needed three units of blood and someone was told to run and get it themselves as they needed it ASAP. I made sure I was not standing in view of the unit door because I was not ready to make eye contact with Barb yet. I still didnít know how I was going to tell her that Sam was gone.
I stood there watching everyone work and I could see people watching me and waiting for me to break down but I was surprisingly calm. I smiled and was polite to whomever I talked to as I kept my eyes on Samís room (I couldnít see her face which was probably best at that time). I was still not sure what this ECMO was going to do when she was still in PEA.I was trying not to think of the damage that the chest compressions were doing to her, broken ribs ets.
Eventually the heart failure doctor came and stood by me. She told me that they were almost done putting the tubes in for the ECMO machine and I asked her to explain it to me more. She said they were putting in two large tubes in her femoral artery (the artery in her right groin) and they will be used to circulate her blood through the ECMO machine that acts as her heart and lungs. This will completely bypass her heart and lungs and will provide the oxygen to the rest of her body that her heart would normally do. I asked her if she would still be considered alive and she said yes. She told me that this was the only hospital in the state of Iowa that even does ECMO on adults. I asked her how long can she be on ECMO. She told me a few weeks at least and this could give Samís body a chance to recover from the virus. I asked her if her heart will ever be able to function again and she said that we will not know for a while and that only time will tell. I was thinking to myself, ďThereís no way in hell she will ever regain heart function after thisĒ.
They finally told me they were done and the ECMO was working. I asked the heart failure doctor again, ďSo she is alive?Ē and she said yes. I told her I needed to go and tell her mom but I wanted to see her first. I went in the room and when I got close enough to see Samís face, a new reality hit me. Her eyes were halfway open and she had that glassed over gaze that I have seen too many times. It was then that I wondered if we just saved her body but not her brain. Was she down too long? I was picturing her lying there as a vegetable and felt my first pang of guilt. What did we just do to her? Should I have told them to stop? How could I have told them to stop? That was not an option! I kissed her forehead and told her I loved her and was going to talk to her mom but I would be back soon. I left the room but grabbed the nurse that had been with Sam all morning. I told her that I was going out to talk to Samís mom but if anything changed, she was to call the waiting room and ask for me specifically and I would come back in. I wasnít sure if Barb was ready to come back and see her and definitely not if something more happened. She promised she would and told me they would be moving her to the SICU which had larger rooms and was more equipped to handle the ECMO machine.
I walked out of the unit and found Barb and Barry sitting on the floor just around the corner of the unit. I could see Clay standing in the hallway outside the other unit but couldnít think of him right now as I had to stay focused. I could see this glassed over look on Barbís face, like she checked out while she was waiting. When I told her she was alive, I could see a little life in her eyes. She said, ďReally?Ē and I said yes. I filled her in on what happened about the ECMO machine and what that meant, giving Sam time to let her body recover. I told her she was still critically ill but she was alive. I honestly do not remember if she went back to see her then or not. I do remember that we went out of the unit and I told everyone the same thing I had told Barb and just focused on the fact that she was alive. I didnít tell anyone about my concerns about her brain activity as I thought it was too much for them to handle. They needed to adjust to the situation at hand and we would cross that bridge when we got there. It would not do Barb or anyone else any good to dump this on them after everything that has happened already.
When I got done filling everyone in on the situation, I made sure Echo was ok with Cale and Clay was with Alyssa. I went with all the smokers (Barb, Barry, Mom, etc) outside and told Clay to check on Echo but stay by the phone in the waiting room. I told him to call me on my cell phone if anyone called. I wasnít outside for more than 5 minutes when Clay called and told me to come back right away. I donít remember if I said anything to my family as I took off running but all I could think about was that I had to be there with Sam. If she was going to die, I was not going to let her do it alone. I talked to myself the entire time I was running up there to prepare myself for what was going to happen. When I got to the waiting room, there were a couple doctors in the room. I looked at them and tried to read their face even before they spoke. One of the doctors looked at me and read my face and told me she woke up. ďWHATĒ? She said Sam just woke up and was pulling at the ET tube and even tried to sit up. ďAre you serious?Ē She said she was and I started crying. I was laughing and crying all at the same time because I knew at that moment she was actually alive. We were still in the ring and we had something to fight for! Barb came up then and she stopped in the hall, frozen in fear as she saw me crying but I quickly told her that Sam woke up. The fear drained out of her face and she looked hopefully towards the doctors. I knew people were looking at me weird as my reaction was greater than any of them understood but I didnít care. She was alive and I didnít just watch them put her through all that for nothing!!! The nurse came out then and pulled me aside while the doctors talked to Barb and the rest of the family. I looked her in the eyes and said, ďAre you sure she made purposeful movementsĒ and she smiled at me and said yes. I think she was as shocked and as happy as I was. I canít believe this! Could she really survive that? Just when we get to a point of no return ( medically) so to speak, she stays with us. Way to go Sam! I told you that you were stronger than this! I hope she is not mad at me for yelling at her
I wanted to go and see for myself but the nurse told me they were getting ready to move her and it was going to be a huge endeavor. She told me to make sure I kept the family in the waiting room and showed me which direction they would be going. She didnít think the family should see them moving her as it will probably scare them. I agreed and she told me someone will come and get us to take us to the new waiting room once they got her in the unit.
As we waited for them to move her, I tried to entertain everyone while keeping my eye on the hallway to make sure nobody was in the area when they started moving her. Jake was being a monster so and I could tell Clay was getting frustrated with having to chase him around so I told him to go ahead and go home. I donít remember for sure when he did leave but I had him take Alyssa with him. She was very mad at me for making her leave but I knew I would not be able to keep my eye on her and be there for her like I should and I wasnít sure she should see what was happening. She left without saying anything to me, sending me the clear message that she was mad at me. I didnít have time to deal with that so I told her I loved her and let the rest go.
I made sure the family was out of view when they started moving her. I knew right away it was her as there was about 15 people surrounding the bed and they were moving extremely slow down the hallway. I watched them go as I tried to wrap my head around who was in that bed. There was no way that could be Sam.
I donít remember who came and got us to take us to the other waiting room but they told us it would be a while before we could see her so we settled in. I am not sure when Lorraine got there but she told me that she had talked to Dad and he wanted me to call him and let him know what was going on. I asked her if he was coming (he lives in New Jersey) and she said he didnít know yet. When I called him, the events were starting to wear on me and I didnít have a lot of compassion left, especially for someone who has to even think about whether they should be here or not. If he had seen what his daughter had gone through in the last 18 hours, he would be on a plane right now (or at least he should be). He asked me to tell him what was going on. I asked him if he wanted me to sugar coat it or give it to him straight. He said to just tell him so I did. I said, ďBasically she probably has about a 25% chance of surviving and if she does survive, she has about a 90% chance she will need a heart transplantĒ. I wasnít concerned about if this information hurt him as he didnít even know Sam very well. He didnít watch her grow up and she didnít own part of his heart like she did everyone else in this hospital. If she did, he wouldnít be on the phone with me right now. I asked him if he was coming and he said he was not sure but to call him if anything happens. If anything happens? Are you kidding me? I said whatever and ended the conversation. I could not imagine anything keeping me away from my daughter if she was going through something like this.
While we were waiting for her room number to be called overhead to let us know she could have visitors, I finally convinced Barb to lay down and rest. It was 7:00 p.m. at this point and nobody had slept since Friday night. I encouraged my mom to lay down too but she refused. I took Barbís phone from her as it had been ringing and beeping constantly and I didnít want it to wake her up. I sat on the floor near where she finally fell asleep. I was like a watch dog trying to protect her. I couldnít be in there to watch over Sam so I was going to watch over her mom.
It was about 10:00 p.m. when they finally called her room number. I didnít want to wake Barb as she needed her sleep but I didnít want her to miss seeing Sam since the visiting hours were so restricted in this ICU. Mom, Barry, and I agreed we will go and see if they would let her go back to see her when she woke up. When we went back to her room, things seemed pretty calm. There were two nurses there and they didnít appear stressed at all. Her blood pressure was not great but it was stable. They told us she was sedated so she wouldnít wake up but that was ok because I knew she could and that is all that mattered. While Mark, Barry, and Mom saw Sam, I checked with the nurses to make sure Barb could come back as soon as she woke up no matter what time. They said that was fine and when I got back to the waiting room, I was relieved to see that she was still sleeping. I wasnít sure if letting her sleep was the right idea or if she would be upset when she woke up but I figured she was going to need to rest when she could because who knew when she would be able to sleep again.
Tina (our cousin) came up to me then and said she wanted to take her two kids back to see Sam (they are 14 & 17). I told her I didnít think that was a good idea at the time because of how that would affect the kids seeing her hooked to all the tubes. She told me that Sam and her daughter (17 year old Alicia) had gotten into a fight the week before and Alicia really needed to tell Sam she was sorry because she had told Sam that she hated her and hoped she would die. I told Tina that this was not the time and Sam had been through a lot that day and she didnít need any stress right now. Tina became upset and said that Barb knew that this was why Tina had stayed around so Alicia could talk to Sam. I told Tina that I didnít think it was a good idea but she could do what she wanted. She said this was bullshit, told the kids to come on and walked away. Five minutes later Alicia was crying and yelling at me and stating that if Barb was awake, she would let her go back and see Sam. I told her that Barb wasnít awake but I was and if she was going to yell, she needed to leave because I was not going to let her wake Barb up. She walked away and Tina and her kids left. 15 minutes later Barbís phone beeped and I looked at it and it was a text message from Tinaís 14 year old son addressed to me. It read, ďIf Sam dies, it will be all your fault you fucking bitch because you wouldnít let me and my sister see herĒ. I couldnít believe someone could act that way and was very satisfied with the decision I made to discourage those kids from going to see Sam. Sam is back there fighting for her life and doesnít need people like that anywhere near her. I was worried about what Barb was going to think when she woke up. Did I overstep my place? I could only do what I felt was best at the time for Sam and for Barb and I would just deal with the consequences if people were mad at me for that.
Some people slept while the rest of us sat around talking. I had been up for over 24 hours at this point so I was pretty loose tongued but it worked to keep people entertained. Barb woke up around 3:00 a.m. We immediately reassured her that she could go back and see Sam whenever she wanted, which is why we let her sleep. She seemed fine with that. I filled her in on what happened with Tina and the kids and she said she was glad they didnít go back because she didnít want any drama around Sam. She said she didnít even know about why Alicia wanted to go see her and about what she had said to Sam the week before. I was so relieved she wasnít upset with me!
Barb, Barry, Mom, and some other people went outside to smoke and I decided I would try and sleep for a couple hours. When I lay down, the room was completely quiet and it felt like this fast moving train had just stopped dead in its tracks. It was like a ton of bricks fell on my chest as the events of the last 26 hours came crashing into reality. I couldnít breathe and every time I tried to close my eyes, the images of the code tried to sneak past this armor I had put up around me. I knew I was going to lose it so I ran out of the room and into the hallway. I donít know if I was crying or gasping for air but heard a noise behind me and it was my sister Lorraine. She put her hand on my back and for a split second, I didnít feel so alone. I started to let myself feel what had happened and just when I thought it was safe to do so, she walked away. I knelt on the floor of the hallway, trying to get my emotions under control and I knew that when she came back I would fail. But she never came back. I was all alone in the hallway and reality set it that I was going to have to do this on my own strength. I would have to be as strong as everyone needed me to be but I would not have the option of someone being strong for me. So, I picked myself up and went back to work.
I think we all drank about a pot of coffee every eight hours in order to keep going and I donít even remember if we ate anything. We waited for morning to come so we could see Sam again and when we did, nothing had changed. Her blood pressure was still not great but the ECMO machine took away the worry of her heart stopping. That was a relief but there was still so much to worry about. They did another ECHO, which showed that she only had about 10-15% of her heart working at this point. The nurses let me look at her labs and she started to show signs of kidney and liver damage. When I talked to the doctors, they said this could be due to the virus and we would have to wait and see if they would recover. They stated that they may have to start dialysis if her kidneys didnít start working soon. It was at this point that they started talking about a heart transplant. The first time they said the words, I was not surprised but I could see the fear on Barbís face. The heart failure doctor explained that we will have to wait and see if her heart recovers but it would be a good idea to start the paperwork for the transplant just in case. She explained that Sam was too sick for a heart transplant right now anyway but there were several steps before she could be eligible to receive one. We met with the transplant coordinator that morning and Barb filled out paperwork and answered questions.
I got a call from Russ (Barbís husband) around noon wanting to know what happened with Tina. I explained to him what had happened and he told me that he understands that I am family but that he considers Tina family too and I needed to remember that. I was shocked that he was talking to me like this. I felt like I was being scolded like a child. He then proceeded to tell me that he heard that I had not slept yet. He stated, ďI canít be there right now because Barb wants me here to take care of the kids. My job is to hold things down here at home and your job is to take care of things there. You canít do that if you do not sleep so you need to go and take a napĒ. I tried to explain that I tried but it was too hard to close my eyes and that I was fine. He said ok but I needed to remember what my job was so he could do his. I asked him when he was going to be there and all he said was ďlaterĒ. I hung up the phone completely shocked that that conversation really happened. Could someone really be so cold, especially considering he has no clue what we have all been through here?
As the day went on, Samís labs kept coming back worse and her blood pressure was slowing becoming more unstable. The heart failure doctor along with the cardiovascular surgeon came and talked to us. They explained that her heart was not pumping enough on its own to get all the blood to where it needed to go and they wanted to put a pump in the left side of her heart to help. This would require open heart surgery but it was the only thing left for them to do at this point. I asked them how she was going to be able to get a heart transplant if she was so unstable. They explained that she could stay on the ECMO with the left sided heart pump in for a few weeks until she was stable enough to get an artificial heart. She could live with this artificial heart for up to two years until they found a heart for her. They wanted to put this pump in right away and explained this was the only way to keep her alive and give her body a chance to recover from this virus. Barb agreed and we all sat back to wait, again.
Russ showed up at some point in the evening. I finally laid down in the waiting room and slept for a couple of hours. Sam came out of surgery not long after that. I was anxious to go back and see her and how things went so Barb told me to go find out and come back and let them know what was going on. While I was back with Sam, the orthopedic surgeon came out to the waiting room to talk to Barb. Molly (Samís step-mom) asked if she should go and get me as I had been the translator up to this point and Russ said no. When I came out right after seeing Sam, everyone was upset. Barb was nowhere around (she took off down the hall with Russ behind her) and Barry told me that some doctor had come out and said something about having to cut her lets open and she may need an amputation. WHAT??? I am gone 10 minutes and all hell breaks loose! I tried to understand what they were repeating but it didnít make sense to me. So I went back to talk to the doctor or nurses. They explained to me that when they were bringing Sam back from surgery, someone noticed that her legs felt hard and so they called ortho to come to evaluate her. They realized that she had developed compartment syndrome, which is what happens when swelling in an arm or leg causes the pressure to build up so high that the blood supply is decreased to the affected limb. They explained that they needed to do a fasciotoy, which is where they have to cut her muscles open to relieve the pressure. I asked about the amputation comment and they said that they needed to do the fasciotomy to prevent that. I made sure they were going to have her well sedated and give her pain medication prior and they assured me they would so I headed back to the waiting room to fill everyone in.
I tried to process what was happening as I walked back. It seemed completely impossible that this was really happening. We hadnít gotten over the stress of the heart surgery yet and now we have another crisis? I was trying so hard not to think of the pain Sam must be in. Again, I tried to think of this as a patient at work and not my Sammymantha. I explained to Barb and everyone what I found out and told them we couldnít go back until they were done (I was NOT staying in there for this!). Russ stood by Barb and glared at me while I was talking, as if he was mad that I was in the spot I was in as translator. Does he honestly think I want to be here in this position? Does he think I want to be the one to tell my sister this awful information about her baby?
When we were finally allowed to go back to see Sam, I started my assessment from her feet up. Her toes were purple and cold and I made a note of where the discoloration started and stopped. She had two ten inch incisions on each leg that was hooked to drainage systems. She had four tubes coming from her chest. She had an arterial line in each wrist and she was on the ventilator. They were starting to talk about starting dialysis and eventually decided to start it that night instead of waiting until the morning. I asked if they were worried about her arms as well because they were cool and the nurse said they were watching them. I asked the nurse what the pressures were in her muscles when they did the fasciotomy and he said it was high. I asked him how her muscles looked as far as damage. He explained that they tried to stimulate the muscles to contract (which is a sign that they are still working) and they did not react. He explained that this did not necessarily mean they were damaged because her potassium level was very high and it could be masking a muscle reaction. Once we got back to the waiting room, Barb asked me what that meant. I tried to explain it to her as best I could. I needed to tell her of the possibilities but also keep hope going. As long as there was the slightest chance she could overcome this and all her other set-backs, we needed to keep hope.
I sat back and watched Barbís support system that previously consisted of Barry, Mom, and myself get replaced by Russ. I watched her take care of him, even going so far as to make a bed for him while he sat there and watch her. I saw Barry sitting back by himself which broke my heart. Just eight hours ago, he and Barb were helping each other through this, taking turns leaning on each other and seeing the comfort they were both giving each other. It made me sick and all I wanted was for Russ to leave as soon as possible so we could get back to the system that was working so well.
I spent a lot of time in Samís room that night talking to the nurses while everyone else slept. I was reviewing the labs, her medications she was getting, and brainstorming with them trying to figure out something that we were missing. I spent time on the internet trying to find case studies of similar cases with no luck. I was trying to think of anything I could do to help her. I remembered how easy it was as a healthcare professional to look at a patient as a case and not a person, especially when they were on the ventilator and had so much equipment on them. So I decided that I wanted every person who walked into that room and was involved in her case to know who they were fighting to save. I talked one of the receptionist to let me print off some pictures of Sam and I taped them all over her room, on the cardiac monitor just above her head, on the door, on the bulletin board, etc. I didnít care if it made their job harder to separate the person from the job. This person was a happy and healthy 21 year old girl that was loved by so many people and had a lot of life to live. The nurses finally convinced me to go and lay down and they promised to call me if anything changed while I was gone. I wrote my cell phone number on the board in her room and went to go lay down.
It was 2:30 a.m. and I had only slept two hours since Friday night. I went around the waiting room and made sure everyone was tucked in and then I laid down. I knew that they were going to be doing another ECHO in the morning. As I closed my eyes, I prayed that the ECHO would show that her heart function went up to 25%. I didnít think I was asking too much, considering everything Sam has gone through at this point. I wasnít asking for her not to have this awful virus or that her legs and arms would be ok or that her kidney or liver would start working. I was only asking for 25%. I was not being greedy. At 3:05 a.m., my phone rang and it was the nurse asking me to come back in. He told me that her heart stopped beating completely. I had allowed myself a tiny bit of optimism and God just took that away in less than one hour. It was then that I stopped talking to God. What good was it when he could sit back and watch this happen and not do anything to stop it. If anything, he was just watching it get worse, even when it didnít seem like it could get any worse. It did.
I decided that waking Barb up to tell her this would not change anything and would only take away what little sleep she was getting. It didnít change the course of action, except we knew for sure that her heart was not going to recover from this point and we were definitely looking at an artificial heart. So, I didnít say anything and waited with Sam until Barb woke up and the doctors told her. I felt completely powerless, like I had failed both Sam and Barb. I couldnít protect them from what was coming, a lifetime of limitations IF she even survived. 16 years of nursing experience didnít mean a thing because I could not stop this from happening.
Barb was obviously upset at the reality sunk in that her heart was not going to get better and her daughter will never be the same. The heart failure doctor talked a lot about the artificial heart and that she will be the first person at the University to get one as they just got approved for them. Everyone was exhausted from sleeping what little we could in waiting room chairs so we focused on getting a family room in the hospital. They told us the wait could take days as there were a lot of people waiting as well. This was our third full day at the hospital. As some people left to shower or sleep, other arrived with food. My sister Lorraine only spent that second night at the hospital and came up for a few hours a day.
We could only see Sam every few hours at this point and she appeared as stable as she could be. She was not getting better but at least we didnít have to worry about her coding again as the ECMO machine (heart-lung bypass machine) was keeping her circulation going. As we were adjusting to the news of her heart stopping completely and trying to wrap our brain around the artificial heart concept, the doctors came to tell us that the pressure in her arms had increased and they needed to do fasciotomies (cutting them open to relieve the pressure) on them as well. Barb just could not take it anymore and she took off down the hall again. She was sitting on the floor around the corner just staring into space. I wanted to go to Sam but the staff said I had to wait as they were doing it right then. I reminded them to make sure she had pain medicine on board and they assured me they did.
Tina was there again and she was insisting that Alicia be allowed to go back to see Sam. I told her absolutely not! She told me Barb had said it was ok and I told her I was going to have to hear that from Barb before I let Alicia go back there. Tina screamed at me and told me I was not going to win. I asked her, ďWin what? We are not in a competition here Tina. I am just trying to do what is best for Sam!Ē It was at that time my mom stepped in and Tina and she started yelling at each other. I decided to go and get Barb because if she said it was ok for her to go back and see Sam; I did not want to interfere. I found Barb still on the floor and when I told her that Tina said it was ok to let Alicia see Sam, Barb jumped up and said, ďHell NO!Ē Although I didnít want to upset Barb any more than she was already, it was nice to see a little fire in her. It was better than her giving up as she was sitting there on the floor. Barb told Tina she didnít want any stress around Sam so Tina backed down but gave me a look and said, ďThis is not over!Ē I was so tired and frustrated at this point, I seriously considered going home. Why am I here putting up with this drama, when I could be home with my own family? I mentioned to my mom that maybe it would be best if I went home for a while as I do not want to add to the drama. I didnít want to leave Sam, or Barb for that matter but I knew I couldnít deal with Tinaís messed up family on top of everything else. My mom looked at me with tears in her eyes and said, ďPlease donít leave me here alone. We need you hereĒ. So I stayed.
Lorraine showed up later that day and I asked her if she had talked to Dad. She said yes and he said he couldnít come because he had to have a colonoscopy done because he had some medical issues going on. After everything Sam had gone through, not to mention Barb and everyone else, he was using this pathetic excuse?? I asked Barb what she would do if he walked into the waiting room right now and she said she would probably start crying. That was all I needed to hear. If there was anything that could make Barb feel better right now, I was going to make sure it happened. I called our dad and asked him if that is the reason he was not coming. He stated, ďHonestly, I saw my doctor today and she said since I havenít had a flu shot, I shouldnít be around there but if anything else happened to let him know and he would comeĒ. What else was there to happen? And then it dawned on me. There was one thing that hadnít happened yet. I said to him, ďIf you are waiting for something to happen, I can give you a list of 20 things that have HAPPENED. How about starting with her heart failing, how about 52 minutes of CPR, how about open heart surger