Wednesday night April 8, I needed to get up there and re-access her port which sits under her bicep instead of on her chest cavity. It had been 7 days since it was changed. It is a difficult access and she has had one too many experiences of people missing the port and prodding multiple times to access it. Capable people are there to do it, she is just done taking her chances. All afternoon the nurse was asking her when I could come up that night. It was an especially busy day. I was working from home with the boys playing downstairs. Our nanny that day had to cancel. I had already gone up for a visit during lunch and left the kids with a neighbor. Around 7:00 I was still working like mad. The nurse kept asking, so the texts kept coming. For whatever reason, after calling 7-8 people I found a friend to come chill at the house after the kids went to bed. I was on a mission to take care of the port. Typically to access, you have to do it between treatments. Among other things, Julie was on fluids and some antibiotics that were timed. For all the hassling she received throughout the day, I was surprised to find, that when I arrived the lidocaine cream had not been ordered. It was necessary to numb the site before I re-accessed her. It had to be ordered up from pharmacy. We waited for about 20 minutes. Frustrated I walked out to see if the order had been signed by a physician in the system. I confronted the CNA who requested the order, to see why it hadn't been ordered earlier in the day when it was known it was needed. Instead of listening to my frustration, she told me "I'm not a nurse, you will have to talk to your nurse." True as it may be, this just inflamed the situation. The "its not my job" attitude is something that has always has rubbed me the wrong way. To add insult to injury, she was standing up and walking away to avoid the confrontation. I am an intense guy, but I'm not mean. I just wanted some dialogue. If you can't communicate with your patients and their families about issues in your hospital, you should probably think about a different career. Most of the time, when we are frustrated or upset with the hospital or staff, there is a solid reason for the problem. Even if it exposes the holes that naturally occur in any large organization, communication will most always temper a frustrated patient or family. Ironically, that night is when I updated this blog last. Mentally it was a marathon day. There have been many of those lately.
That week, Julie's oxygen dependence was as high as 8 lpm and by Thursday it had made it's way down to 4. For all intents and purposes, things were on the mend. She was going to be discharged on home oxygen, something we haven't had here since pre transplant in March of 2011. It was not a big deal since she appeared to be improving. She came home that Friday April 10. We very quickly got into a routine. I would come in her room and pound on her back giving her CPT (Chest PhysioTherapy) when she did Albuterol and Hypertonic Saline nebulized treatments 3-4 times a day. This helps break up any chest congestion that may be in her lungs. Her lungs function as healthy lungs, but she is so immune suppressed and knocked down from the chemo, that it takes longer to heal than normal. The weekend was long for Julie. She was finding it harder and harder to breathe each day. She had the concentrator turned all the way up at night. The first night we even used some E tanks to give her better oxygen saturation. Sunday she decided to go to church for the first hour. Several people were floored to see her there. I think she wanted to have something normal happen for a day. One friend came up and said "What's goin' on?" Julie replied "Just breathing." We all laughed, only realizing how much truth there was to her statement. No drama, just telling us like it is. It took everything to get there and get home, just for one hour. Monday came and she was still on oxygen. We had the home care company bring out a concentrator that would put out a higher flow. By then, her dependence was up to 6-8 lpm.
When she returned to clinic on Tuesday April 14, she was running a marathon. In fact, since that Saturday she had a heart rate of about 110 and several low grade fevers. She was very labored in breathing. Her emotions were close to the surface as she focussed on just breathing. She was relieved to some degree that they were going to admit her. The lack of improvement and the negative direction things were going were really giving her anxiety about the danger to her graft (lung transplant). Long term inflammation can lead to rejection. We had asked for the typical anti inflammatory regimen of steroids after she left the week prior. They gave her a small dose of prednisone that didn't seem to affect the inflammation. They admitted her to the UofU so her pulmonary doctors could follow her. She was asking for the typical 1g of Solumedrol (steroid) to really knock the inflammation out. The reservation Huntsman had was the immune suppression steroids give that could be a breeding ground for the Lymphoma if it was still in her body. It is truly a benefit risk analysis each week. We have tradeoffs each way. Give steroids, and allow lymphoma to grow aggressively. Don't give steroids and keep the lungs inflamed leading to further infection and inflammation, risking rejection. The pulmonary docs decided to start with some broad spectrum antibiotics since that was the simplest approach with the lowest risk. The RSV had appeared to have in part led to a bacterial infection. Two days later this was confirmed with the culture. I spent that first night with her. She asked to have bi-pap to help her sleep and heal. She knew if she was able to sleep deeper, her body would heal faster. That night we saw her heart rate come down to the low 90's. It appeared the antibiotics were helping and she was healing to some degree. The next day her heart rate was under 90 and she was only requiring 4 liters. She took 3 walks that day. She always tries to be up if she at all can bear it. All she felt like doing was resting, but she mustered up the strength to get up and walk to get the air moving. The discipline of a cystic kid turned adult; They learn through experience the power of perseverance.
I had a neighbor come to the house again that Wednesday after my kids were in bed so I could go see her. She was visiting with my Sister-in-law when I got there. She seemed to be in much better spirits, less defeated and more up beat about the days accomplishments. We were told they were moving to another room in the Pulmonary unit. This was over where all the CF patients were, where we used to stay years ago. After waiting for a few hours, the normal snail communication of orders and necessary sign-offs came through and we were able to move. They took us to a closet they called a room ;). We have been spoiled by the newer facilities up at Huntsman. When I arrived home, I found Charles sitting on the kitchen floor. My neighbor friend Joe, was at the kitchen sink washing vomit from a myriad of clothing and bedding. I was in shock at what must have happened. I had sent him a text that I would be another hour and he had said. "Don't worry about me..." Little did I know that he had just cleaned up enough food to feed his entire family, only it had come out of my 6 year old Ben. Now some of you may be on the verge of vomiting as you read and imagine the scene, but as a Dad, I have to say I was actually a little proud. That kid had eaten like a horse that day. I was sad to hear he had a yard sale of vomit on his bed and a little mortified my neighbor was stuck cleaning it up. Come to find out, Joe had sent me that text and just after, Charlie the 15 mo old did the same thing in his crib. There was already wash in the washer, and he was hand washing the rest so it would be ready for the next load. It honestly couldn't have happened to a better dad out there. He handled it just like I would, took care of my boys, and got them back to bed. After all, as he said, "Its not the first time I've cleaned vomit." He's a champion. As he was leaving, I heard the wailing from the downstairs. He almost looked as if he wanted to get right back in the battle. I relieved him and sent him home. Sure enough, we had another yard sale on the new bedding. Keep in mind, his twin...sleeping through the whole thing. Jack allowed me to stand him up on the side of the bed while I quickly changed the sheets and got him back in. I am laughing as I am writing this cause it just couldn't get any worse right? Well Debbie Downer is here to stay so sit back and get some popcorn. It gets better. I spent the next hour consoling, cleaning, and washing various articles in the home. I managed to put a red comforter in with a white sheet...yeah it's pink now. All the while Ben was in the shower...for the second time in an hour. After getting out, he had one last solid hurl, this time in the toilet. I decided to put him to bed on the couch. I gave him a scum bucket (that's just what we call a bowl to hurl in during the night) and some saltines and told him to call for me if he needed me. He had a few more dry heaves but was done after that...so I thought. I don't recall when Jack had it, but it was the week prior when Julie was still admitted. That is the true silver lining in all this. Julie avoided the vomit and was at the hospital both times my kids hurled.
That Friday I was able to get out and have some fresh powder on the snowmobile. The boys were at school, Alta had just over 3 ft of powder and it was supposedly a big Central UT storm. I had only 2 hours to ride in the morning but it really did something for me. It was only about 8 inches where we went, but it was great to get out. I felt I could face all the vomit and problems the world could throw at me. So here it is...I came home to find a letter from the IRS auditing my tax return for 2012. Initially, I had an oh crap moment. After it settled in, it just became another deadline. After all, it is bound to happen to everyone at least once in your life, so why not have it happen when you are all but numb to any shock and stress. I started to laugh at the irony. It could be far more stressful were it to happen this time last year, when there wasn't a care in the world. When I received this text from Julie after watching her run a preverbal marathon for days on end, the audit became background noise: "I'm not really feeling short of breath like I was before." Every stress dissipates when the one you love is improving in this long fight. She came home the next day.
Last weekend was still touch and go. Every time it looks like she is improving, it ends up being nominal at best. I spent my morning doing wash and disinfecting the nobs and bathrooms. She had me wash the duvet cover even though it had been cleaned the day before. I couldn't argue, she just spent two unplanned weeks in a row at the hospital. The whip was out and it was crackin'. Clearly she must feel better if I am now an indentured servant again right? Well, that night after insisting Ben eat his dinner, he hurled at the counter. This bug was hanging on. Julie couldn't stay far enough away from the kitchen. She still had a low grade fever so luckily she was in her room anyway. After cleaning it up and going through the normal evening routine, we retired. Only a few hours later I woke up with a lull in my stomach. At first I wrote it off to heartburn. It took me out of bed and into a soaker tub in our basement. I couldn't get comfortable. I ended up just praying to have it taken away, knowing full well that as soon as I hurled I would feel better. The empathy this was teaching me for my children and more importantly for Julie was palpable. I hate this feeling. You just want to die if you are to go on feeling this way indefinitely. Luckily, it only lasted about another hour and then the deed was done. I quickly fell asleep after that.
So there we were. Julie was home, at least 2 of us were sick and the other 2 were showing signs that the vomit was only the beginning. We isolated ourselves that next day and I thought I would have a good time watching an old Chris Farley movie Black sheep with the boys. It was pretty much me laughing and turning around to stone cold 6 year old faces. We didn't make it all the way through. Julie was feeling lonely and still a little feverish. The O2 had climbed back to 6-8 and she was getting very discouraged. We decided to take a little walk at Canyon rim park. Seeing the boys play and be at the park was really nice for Julie. Watching Charles face as he goes down a slide is a sight to see. He can't get enough of it. The secret with Julie when she is feeling down, is just be with her. It is so therapeutic for her to be out and with the family. We went to her parents to celebrate her mother's birthday. It was nice to be with everyone and have Julie really feel of their love. At the end of that night she asked for a priesthood blessing. In the LDS church, any worthy male over the age of 18 can give these blessings by the laying on of hands. I have been doing it on and off since that time in my life. I gave her a blessing that will go down as one of the most unique blessings I have given. As I started, I had the distinct impression to bless her to be healed from this ailment. I resisted saying it because I wrote it off to my own will. It kept coming back and I felt impressed to say it. The blessing really brought comfort to me and Julie in the sense that it explained the purpose of the problem she is experiencing. As she drew upon her Savior for assistance and help, He would take this yoke or burden from her. Throughout last week, I frequently found her on her knees, even when she was exhausted. Sometimes Julie will just throw her hands over to mine when we kneel down for prayers at night, so seeing her on her knees so frequently was moving for me.
Julie had another fever break as she frequently has that Sunday night to Monday April 20. In the morning, she sent me this text: "I can't really concentrate on anything other than breathing." She was crying. She was scared, anxious, tired, defeated, and discouraged. Again, each time she was feeling a little better, she felt worse later. She received a very nice card from my Grandma Mona Layton that day that seemed to turn her day around completely. Right now, her appreciation level is so high and so deep. That day was a rough one for all of us. I was still not feeling well, trying to work. The boys were being 6, not obeying like they normally do, and Charles was officially sick with an ear infection after I had taken him to the doctor. Julie only felt frustrated since she couldn't physically come out and help and it was too risky. She had her oxygen up to 8 lpm at times when we would walk. When we were on one of these short walks to the corner and back, I asked her, "Do you believe in the healing power of the priesthood?" Of course I knew her answer would be yes, but I think the two of us were beginning to wonder what was it about that blessing on Sunday that wasn't adding up. She knew she had to do her part and work and pray in order for the blessing to come to pass, hence the frequent times on her knees. Wednesday we had a clinic visit with Julie's Transplant team and Dr. Cahill. Chest x-rays had become worse than at discharge the week before, she was on about a week of antibiotics and she was still fevering and short of breath. Dr. Cahill wanted to bronch her to see what else they could find. She considered taking a boipsy from the lungs, but ultimately wanted to just see, and take samples of congestion in the lung. During an bronchoscopy, the lung is calmed with a nebulized litocane treatment. This prevents the patient from excessively coughing. They also give her the Michael Jackson drug to partially sedate her. She is awake as a camera goes down the throat into the lungs. They inject saline solution into one side of the lung and suck it back out. With the saline, comes sputum cultures from deep inside the lungs. This is where the inflammation is. Possibly it's an independent infection from what is colonized in the larger airways. This is what we are currently treating with antibiotics. Julie's lungs looked very clear. Low inflammation in the airways with very little "gunk". However, because of that, the Dr. suspected inflammation in the smaller airways. There were a few samples of sputum that came up so we will know in a few days if they have something different growing. That night Cahill put her on a larger dose of Prednisone. She is still currently on it and it has made a marketable difference. Tonight at my parents she was on ½ a liter while sitting on the couch. She is asleep on 2-½ lpm as I type this and that may be overkill. Clearly a large contributor to this has been inflammation. We partly wish we were on it sooner but the course we took slowly helped and was the lowest risk course of action.
I stand here alone at times despite my knowledge of the Savior. I watch as my wife suffers and I cannot take it from her. I can only imagine the pain of our Father in Heaven as He watched His Son Jesus Christ suffer. It is agonizing at times to not be able to intervene and take it away. Julie at times has to bear it, as do we, as individuals in this family. People can lighten the load, burden, and take some of the stress that is added to our lives. But ultimately we, and she must go through this. Julie frequently reflects on the patients out there bearing this without support. It moves her to tears to think of the dark moments they must feel bearing this without others close to them. As I said earlier this year in a post, it is at these moments when your back is against the wall, that you really find out what you believe in. For some it is when they discover what they believe in. It is not a hope, or a figment of an imagination, but it becomes knowledge. You have no choice but to pray to that God you were taught would listen. You find yourself relying on the scriptures you have read and the subtle thoughts that are brought upon your mind. It is these small moments that you see the small miracles of a higher power. It is not therapeutic only, but it is necessary for our happiness. When we are brought to our knees in desperate times, we seem to pull out of those times. We all do. Is that by chance? I believe it is a fruit of our divine nature. I believe it is a fruit of a divine Father in Heaven. I cannot take pain away from my children, but I always try to comfort them, and teach them. He is doing the exact same thing.