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.