We have been off the radar...somewhat deliberately. Julie had an additional exacerbation in December just 10 days before Christmas. Luckily we caught it early and she was able to come home just before Christmas and finish her meds at home. It was a sweet reminder of how short life is. I posted a pic on Instagram of Julie wrapping gifts in her hospital room. There were a lot of sentiments about her being a great and loving mom. All of these are very true, but at the heart of it was "I don't want to be wrapping these gifts on Christmas eve." But I digress. The thought that she was thinking of having a perfect Christmas for her boys when she might not even be able to attend, substantiate the comments on social media about her perfect love for her children. Her wrapping is pristine and looks like Santa himself or a well trained elf had done it...and she had. It doesn't go without saying that the impeccable wrapping was short lived as the boys tore into their gifts Christmas morning. She always makes me take a picture of the spread before they come in the room. In addition to having a great Christmas morning, Julie insisted we host her family and my parents again for an annual brunch. Thanks to our mothers, it went off without a hitch. In the end, she just wanted to be with her family and didn't care about having paper instead of the usual dish spread. It will go down as one of the sweetest holidays my family has had.
Julie was in for a lung infection during December. With so little reserve in lung function, the smallest thing can turn her. She was able to follow up the IV antibiotics with a 28 day dose of an inhaled antibiotic called Cayston. It helps to keep the infection at bay. Last Wednesday January 20th she asked them to order another inhaled antibiotic Tobramycin. She was concerned that when she finished the following Sunday she would start to crash...and she did. It was only 5 days after, and we were in the ER yesterday morning. We probably could have come in a day or two sooner, but we were battling with prior authorizations, having to order through "Specialty Pharmacy" (they are very special), and questioning $250 co-pays for multiple drugs. We finally got the med first thing Friday morning, but it was clearly too late. She progressively was waking up feeling nauseous, and bringing up a lot of mucus. That morning was no exception. She was doubled over, low grade fever of 101, and choking on her own secretions. She spent the night on high flow nasal cannula with the Airvo, It puts out 37 degree air that is fully saturated to 44mg/L Humidity. This is the natural lung condition and using this therapy helps keep secretions mobile preventing cell and cillia damage in the lungs. It is a therapy that is used in the hospital to keep patients from escalating to the ventilator. It works great when she is in front of the progression of an illness, but she told me, "When there is this much production, it's more than just the therapy helping me move secretions, the body is producing more mucus because of the infection."
I am here in her room at the UofU hospital and she had deep bone pain in her legs and pelvis through the night. Anytime the body is working hard to fight something off, it produces more marrow and white blood cells, this may be correlated with her pain. It has also been hard for her to control her sugars. As she gets sick, her insulin resistance seems to increase. With that has come nightly foot rubs since her feet feel like they are on fire and are in a lot of pain. With the pain comes nausea. She was able to take some Zofran, and then they gave her a second dose via IV this morning. She is sleeping again and seems to be more comfortable. Last night she was in excruciating pain. When she asked for some Dilaudid, which wasn't on her orders, the on call doc said he wasn't comfortable (via the nurse) giving her that till tomorrow. Julie insisted once more and told her they had given it to her in prior stays. She went from telling them her pain level was 2 earlier in the night when they gave her a low dose of Oxy, to it being an all out 10. She was sobbing. The nurse asked a second time and once the doc came in to see her, he consented. She slept all night.
Yesterday in the ER we had one of those moments that make you turn your head after it had passed. We had a yoked bro who probably had a sick workout doing cross-fit that morning as one of our nurses. Staff are always a little taken back when Julie insists that I access her port in her arm. Her main nurse was fine with it, but this bro was clearly threatened. Aside from being against policy, it is even more irritating for them since she is basically saying 'staff have tried and failed too many times for me to trust you over my husband.' Some people don't mind at all and they see the value in Julie being psychologically comfortable, others just can't stand it and look for things I do wrong. When we had gotten a room upstairs and they were getting ready to transport her in her bed, this bro decided to disconnect her oxygen from the wall before raising the bed to connect her to an e-tank under the bed; honest mistake. She was on 6 liters of oxygen, so nothing to shake a stick at. She immediately noticed and asked if she was disconnected. He held up the end of the tube and chuckled and said yeah you are. "Are you going to reconnect me?" "I will once I move your bed up so I can reach it...One thing at a time." I chimed in "Welcome to my world buddy" attempting to imply that you have to be on it with Julie; she is constantly in survival mode. I admit it can garner irritation when she needs something right away, but I am her husband, and spouses get to be irritated with each other...yes even when one is sick. It came across as conciliatory based on his next comment: "You need to learn to wait." She was off O2 for probably only 40 to 60 seconds but she quickly will de-saturate. As we thought about his comment later, it became increasingly irritating. He should have moved the bed up before he disconnected her. Maybe I could give him a coffee straw to breathe through for a day to teach him some empathy. Anytime I am slightly irritated by an immediate request by my wife, it is squashed by the fact that I am perfectly capable, and able to help. I quickly realize how wrong it is to be irritated and meet the eminent need. That said, her nurse has an ethical duty to her to look after her needs; both physical, and psychological. Sure, she probably just de-saturated for a few moments, but his need for control was a little demented and frankly disturbing. The fact that you would not only not fail to meet the request of a patient, but one that is directly related to her ability to oxygenate is morally wrong. Why not just reconnect while you slowly raised the bed?? Not to mention implication of patient experience: "You are under my control, this is my unit" is a sentiment that often comes off in body language more than words in the healthcare world...Horse shit. Remember your place as a professional and a personal care giver, its not work, it is not a chore, it is not a duty, IT is for the people. YOU are in THEIR world. We are here to serve the needy, lift up the hands that hang down, not to dictate how they will fall into line. These are your family members, your friends, your nieces and nephews and children. We aren't cattle. Sound entitled? It is. It is their life, and it sucks right about now. If you don't want to see it this way, you will have a career of irritation, poor care, and poor outcomes related to your attitude. Change to the banking industry. You can make some sick cash BRO...This isn't a problem in one facility either, it is everywhere, in every facility. It is the nature of man. "There are two races in this world; but only these two. The race of the decent man and ...of the indecent man. Both are found everywhere. They penetrate into all groups of society. Not group entirely consists of decent or indecent people." So when you are caring for others directly or indirectly, ask yourself where you fall; Decent or Indecent. We all do indecent things, and I am sure this bro can learn from this and change, if he isn't too pumped up on bro milk with some sick natural protein.
I hope that last paragraph made you laugh a little, but made you think about how attitudes are read not heard by those we serve. They can calm the spirit, or bring unneeded anxiety. Nothing is more irritating to me working and living in the healthcare industry when caregivers stop caring and just work. Care comes first. Work is second. Protocols save lives, but so does the gentle touch of a loving nurse and/or doctor.
One last rant in the interest of protocols. Nebulized treatments are critical to the pulmonary ill. Julie gives them to herself 4 times per day at home. In the hospital ONLY a respiratory therapist can deliver these treatments. This morning as Julie was choking on her own spit, we waited over two hours for a RT. They were short staffed. I attempted to find someone in their office downstairs and it was clear they were all on the floors....not my problem. A therapy as simple as delivering nebs needs to be available to staff other than respiratory for these exact situations. I was ready to go pick up nebs from home and bring them up to give to her. It is these types of policies that cause some patients to escalate. "I can't deliver it because only respiratory is authorized to do so." Horse shit. (I like that today). Anyone can do it. My 7 year olds know what to get Julie. The patient can deliver the therapy once the med is available. You know the old saying: "Follow the money." Only RT can deliver because it needs to be billed internally by RT. This is the dichotomy of healthcare. Protocols are in place to protect patients, but sometimes caregivers are held so tightly to those protocols or driven by what is billable to their department that using their brains doesn't seem to be an option. I feel like I am talking to drones at times. I know how frustrating these situations can be for the staff as well. Many of them are in these intense situations where they are pulled from one end of what they believe needs to be done to help and another where they are following protocols. There is no doubt that the data supports writing and following protocols, but people still need to be able to work outside of protocols when it is in the interest of the patient and their outcome. People in healthcare need to be empowered and corralled at the same time in order to improve outcomes, and drive down costs. We spent all week deliberating with clinic (there were valid concerns around kidney function for not starting Toby that Julie and the doctor agreed were worth facing 10 days ago), then insurance, and then "special"ty pharmacy, on getting her a med that would have prevented this exacerbation. We got it 5 days too late. Now she is admitted, and the time delay costs the insurance company, hospital, and patient, far more money than it would have had they listened and acted immediately. It is a slow machine working with the three entities, and one could make a living as a consultant doing so. That is not a good thing. Healthcare needs improving and it is going to take a lot of us to do it.
I have been reading Man's Search for Meaning by psychiatrist Viktor Frankyl about his experience as a prisoner at Auschwitz during WWII. The title of this post was a topic Julie and I spoke about a few weeks ago. When she was single, finding a spouse to start a family with was her WHY, it quickly shifted to having children after we were married. She worked tirelessly from a near life ending lung infection in 2005 to come off oxygen in her mid 20's so she could feel "normal" when looking for a spouse. She was told she would never come of oxygen again. She came off. We met shortly after and married 9 years ago today. She didn't have enough lung function to safely have children, and we explored surrogacy. After two failed attempts and courting several surrogate candidates, my sister came forward and offered the irreconcilable gift to carry Julie's and my child. That 3rd attempt a IVF via surrogate turned out to be Ben and Jack our 7 year old twins. As she neared the end of her life in 2010, her then 2 year old twins gave her another WHY. She was faced with the choice of an 80% chance of dying in the next 5 years or having a complete shift of lifestyle for a short period of time. Raising her boys was her WHY to live for. She underwent a work up for a double lung Transplant when she had the flu and was less than 25% lung function. I remember her slaving through the different procedures, with nurses and doctors telling her she didn't have to do them that day. She was transplanted 6 weeks after they turned in her work up. She was off oxygen within days, walking the day after, out of the hospital 9 days post op, and running 3 weeks later. She immediately shifted to wanting to carry a child. It was absolutely crazy what she was risking; everything. Yet she saw it as the ultimate sacrifice to bring another child into this world. He will always know that she risked everything to get him here. Finding out she had stage 4 endometriosis she pushed on and said to me "I just want to try. If it doesn't work, I can live with that. I can't live without at least trying." After 4 attempts at artificial insemination and an 18 hour window when I was home while she ovulated late, Charles was born 7 months later. He came home with mom without any respiratory needs. For all intents and purposes, all the risk to the baby was theoretical. Today, he is a healthy happy 2 year old. When she was faced with a rare aggressive Post Transplant Lymphoma (1 of 35 transplant patients of all types of organs in the last 18 years to get) she had to find another WHY to live for. She did. She fought to be here with her family, both immediate and extended. It has become increasingly important to her to be with her family. To have harmony in her family. She was cancer free after a brutal run of chemotherapy that some have labeled "we threw the book at you." Now she is faced with the damage that life saving drug regimen did to her transplanted lungs. She is battling to save those precious lungs that are slowly but surely getting better. No doubt we will have additional lung infections, but hopefully they continue to be fewer and farther between. She wouldn't be qualified for any additional transplant for at least 5 years if at all. She has had many times of deep despair, and questioning as to why she can't get better, faster. "Any time I have wondered about God helping me I quickly realize 'How could I doubt. Look at all the things He has done for me.' People may forget God and be upset about this or that in the world or in their community, but (with tears in her eyes) He will NEVER leave them. He hasn't left me. He is ALWAYS there." She admits it is hard to find the WHY right now after being beat down so many times and continuing to persevere and get up. When she said this I just looked at her and said, "Uh, we're still here." She immediately started to laugh and said, "Of course you and the boys are what I am living for." She later told me, while watching a Ken Burns documentary on Cancer "That is what is so hard about this; the thought of leaving your family is what makes it so difficult." The key for her and for us is believing in a future. What we are going through doesn't even shake a stick at what prisoners went through in concentration camps during WWII. Nor does their suffering equate to what Julie suffers. The key component for the survivors was a WHY to live for. "What does life expect of me?" instead of "What do I expect from life?" I am so grateful to be with one of these great souls. We all benefit from knowing her story. It is one that is at times difficult to read or listen to. For those of other faith or no faith at all it is still one to take a page from. She keeps pushing for the future. We keep scheduling trips, outings, etc. Last night we had to cancel our hotel downtown for our anniversary. She cried for a moment at the extreme let down of yet another plan thwarted. But we watched a movie. And it was good. Please share Julie's story. She and I see it as a way to give back to the rest of humanity; Our way of thanking God for what He has afforded us thus far. We are far from exemplary, and have many flaws that are often revealed here. What you see is what you get with us. We share because we are grateful to our Heavenly Father and to all those who have cared for us within and without the hospital. There is a lot to read out there. Our hope is that this is well worth yours and others time along with the time to write it.