Palliative Care: Part Two

            I wrote part one of this series almost a year ago. Even then it was written nearly six months after the fact. I had planned on writing part two immediately, but I couldn’t. Now, as I sit here writing this I am choking back the tears of the horror that I felt during that time.

            We were admitted on September 2, 2014 after J3 had lost five ounces in a single week. Failure to thrive. During the next nine days we would watch him slowly begin to gain weight as we waited to have a cardio MRI done and impatiently wait for the results. Two days later, the MRI results are still not in but a cursory view of the prints and ultra sound leads them to believe things are worse than everyone had originally assumed.

            The reality of the situation is that we are going to be here longer than we expected. Longer than anyone had explained. My husband has to return to work. He is running out of vacation time. We are running out of finances. We live from paycheck to paycheck as it is. And we have two older boys that although love their Nana, I have no doubt they would enjoy seeing their daddy. I miss them a lot and while I have concerns for them, my focus is completely on J3.

            September 10, 2014 was a whirlwind of people coming in to get signatures. Do I know what is happening tomorrow? Not really. He is having a procedure called a DKS. I still can’t really explain what it is. I break down and call my mother, who tells me to call my husband. He does the only thing he can. He sells his car. The transmission is going out anyway and it gives us a little over a week worth of funds so he can take off work. I am relieved to know that he will be with me in the morning as our son goes into surgery.

            September 11, 2014, we walk J3 as far as we can go. At 7:10 A.M. my husband wraps his arms around me to give me strength and comfort. It was after 4 pm before I could see J3 again. Just long enough to take his picture and stroke his hand, leg and head. He shed tears whether for me or not I will pretend it was a reaction to my presence. An hour later we got 10 mins with him. This time he opened his eyes and gripped our hands. My heart broke when I had to let him go and his blood pressure dropped. They told us there were issues and he was going back into surgery. Blood pooling. Blood pressure. O2 sats. Two hours before we saw him again.

            September 12, 2014, 4:00 A.M. The doctor needs to talk to you. Not the words I wanted to hear as I woke my husband up and we walked down the eerily silent hall to my son’s ICU room. They tell us that they have been fighting to stabilize him for the past two hours. They aren’t sure what to do for him. I have a mental break. I fear God is calling home my son. For the next two and a half hours I sit vigilantly praying. Exhausted, I say goodbye to my son not expecting to be with him again. Two hours later he is stable, for the most part. We will be fighting against oxygenation levels for the next eleven days.

            To say that this stay in the hospital was an emotional rollercoaster ride is deceptive. To wake up in the morning and have had the night go great, to two hours later his oxygenation levels crash, to an hour later he has stabilized, only to repeat at least once more today, then do it again for the next eleven days brought me to a mental breaking point. During this time I was able to go home and visit my two older sons after being away from them for three weeks. Those three weeks felt like months and I wasn’t even halfway through my stay there.

            September 23, 2014. J3 goes in to have exploratory surgery to figure out why his oxygen levels keep dropping. It is never good news when a social workers calls you into a consultation room. The level of anxiety rises when a member of the pastoral team joins you before the doctor comes in. He didn’t code, but he was placed on the bypass machine to keep him alive. We still need answers. The surgeon will do his corrective surgery as soon as he finishes his current surgery if we find something he can fix. This, of course, is a paraphrasing of a longer conversation. I managed to keep it together until everyone left before collapsing on the floor. A mess of devastation, anger, and prayers.

            Joe is once again rushing back to my side. Thankfully, they manage to find what is wrong and it is fixable. I stand by J3s side as we wait for him to return to surgery with the surgeon to shorten his shunt. Joe makes it by minutes in order to tell J3 he is loved before he returns to surgery.

            September 24, 2014. Everyone is encouraged. I thank God as the morning holds continued improvement. Talks of closing his chest again. Deep sighs of relief. Hugs from doctors and others who have been a part of this rollercoaster ride. There is finally light at the end of the tunnel.

            This was the first part of our seven week stay at the hospital. Even today, I struggle with the fear of possibly losing my son because his heart gives out. The cardiologist remembers to remind me that this is palliative care. My son’s heart will still give out in ten or twenty years. My solace is the idea of how much can change to improve his odds during those years.

Who I Want to Be

            I came across an article not too long ago meant to help people begin changing personal habits. While I can no longer find the page I borrowed from I found it to be a great exercise in visualizing what I wanted to be and how to make the changes required to become that person.

Let’s begin:

Who do I want to be?

            I want to be that mom who gets up early to work out before packing her kids lunch and getting them off to school. There is no over reach here. I am fine with handing them a generic toaster pastry and a piece of fruit for breakfast. I want to be able to dedicate myself to writing and volunteering in the hopes of someday making the world better. I want to put everything aside in the evening to play the soccer mom and have dinner on the table at night when everyone gets home. Crockpot meals make this a complete possibility for me since anyone who knows me knows I am a lazy cook. I want to help my children realize that the world is so much larger than just the everyday routine that they see. I want to be healthy. I want to go hiking and bike riding with my husband and children on the weekends during the summer and play video games or watch movies with popcorn during the winter. I want to learn to rock climb and kayak. I want to read to my children everyday even if it is only a comic strip. I want my children to see me reading the Bible daily so that church isn’t just a “Sunday thing”. This is the person I want to be.

What does that person do every day?

            Get up early

            Exercise

            Makes healthy meals

            Writes

            Reads

            Studies the Bible

            Here is the catch. In order to make these changes, you just start with one change. Since I already read the Bible daily with my husband in the evenings and there is a rule in our house that whenever a child brings you a book we have to stop what we are doing in order to read that book to the kiddos, I am choosing to exercise. Can I make this a daily habit for two weeks? Yes. By not planning out a daily routine, I can choose daily exercises that I am comfortable with. As my body hurts less, I can push harder. I can change up routines from day to day based on how I feel. Even on days of rest, I can dedicate that day to stretching.

            There are days when I wake up and don’t feel like working out. In order to keep going, I keep a health journal where I record the food that I ate, the exercise that I did, and how I feel about the day overall. I have to take a blood glucose test several times a day which is another reminder to exercise as it helps keep my numbers down.

            Here is the big thing to remember in attempting to make change. One slip up, two, twenty, it doesn’t matter. Momentum matters. Mantra: No harm. No foul. No feelings of failure. I will start again. Tomorrow.

Evolving Dreams

            I have always enjoyed writing, as long as what I was writing was not directly about my life. I was adopted when I was four. I have a lot of horrible memories of my early years. Therefore, talking about adoption was a sensitive subject. I felt abandoned by my biological parents and bought by my adoptive parents. Now, I can admit that my birth father was probably grooming me for a life of sexual abuse, a cycle repeated by what his grandfather had done to him. Unfortunately, the repercussions of such early grooming would follow me until my mid-twenties. But in my early teens I was hostile and secretive about such discussions.

            Growing up I would do everything possible not to confront myself and my past. I wrote about fantastical worlds where everything was perfect and no one suffered. I wrote about people who were flawless. As I grew, I hated those around me. I hated the world I grew up in. I hated myself. I did not believe that good existed. I believed that every good action masked a devious desire that would expose itself at the last moment when it was too late to avoid. I was bitter. Slowly the people in my stories became monsters. Vampires. Werewolves. Witches. All devious and deceitful.

            Then something in my life changed. I met a good man. I met good people. While I struggle with the ideas I grew up with, I was forced to accept that there was actual good. Not perfect by any means but good. My monsters changed. They began to have good intentions despite the outcome. Then God become a priority in my life and therefore my stories. One of the women I critique with began to notice this change as well and pointed it out to me. For good or bad, I am God focused in one way or another. This conversation led to another one about how I wanted to portray my work for publication.

            I was staunchly against publication under a Christian title. I didn’t want to bottle neck my work. I wanted it to appeal to a wide audience that might read about vampires but not about God. There is a joke in there since I am not published and should be grateful that anyone is willing to look at my work, but…

            All of this has led me to become more aware of what I write and the point of the stories I want to tell. I have accepted the change in my own work. I have experienced a change within myself. While I am attempting to become a regular blogger, here at Its Shire-shh-mit, where I write about my life. Attempting to become a writer. What it is like in my house as a stay-at-home-mom with three boys. Dieting because I am morbidly obese and have type two diabetes. What it is like to deal with a child with a congenital heart defect. I am also preparing to enter the world of devotional writing. An idea that truly terrifies me. However, it is something that I feel I am being called to do. The blog is called Amateur Prayers and I am not sure what will come of it, if anything.

            At this point in my life I am casting a net wide. I have applied and been accepting and hopefully will be completing a B.A. in English. My goal is that my writing will be improved and enhanced by studying others. After that, the plan is to push to graduate school for religious studies. What will become of me and my education after all of this, I cannot say. I can say that I place an amazing amount of faith and trust that God will lead me and my family toward a new future. And that I hope that future will include writing in whatever form I am drawn to.

            Follow me as I find out what my future holds.

Tomorrow

            Almost a month ago I saw this video on Facebook of this woman demonstrating ab workouts. I thought to myself, I can do that. A few days later I started. Realizing a few months had passed since I last worked out, I didn’t push myself too hard. I started with one set of ten for each of the four exercises. Excitement filled me the next morning when I woke up without any pain. I immediately increased to two sets of ten. This progress continued and soon I had added leg lifts and was doing two sets of twenty of each of the four ab exercises. The exercising felt good. In the span of a week I had lost four pounds. I stopped drinking soda. I was eating healthy. I Felt Good.

            Two weeks of great work came crashing down. I got sick. I had never experienced a sinus infection before. The pressure in my face was intense to say the least. I thought my teeth were going to fall out. My jaw throbbed. My cheek bone felt like I had taken a punch to the face and at any moment my eye socket would burst and my eye would fall out. Needless to say, I didn’t want to work out. That started two weeks ago. Once the pain of the illness had left me, I battled with the ability to breathe. The buildup of mucus and unending need to blow my nose. This past Sunday, I could breathe enough to sing, of course my voice was horrific. I refrained from torturing those around me.

            I worked out the following Monday. I did a single set of fifteen of the original ab workouts. It was easy and I should have pushed myself forward, but I didn’t. I had already spent a week eating horrible food. Coke was already back in my diet. I managed to eat well all day but by the time my husband got home, I was exhausted. I ate a bowl of cereal because it was quick and crashed. Tuesday was not any better. Laziness had crept in and I was craving caffeine. Neither of these things are easily overcome by me. Wednesday, I spent the day away from my house. Quick foods for the children never result in healthy eating for myself. But the promise to myself is to start tomorrow.

            No harm. No foul. No feelings of failure. I will start again. Tomorrow.