Palliative Care: Home Again

            We have now been home for just over three weeks. J3s heart cath showed that everything was working as expected. Since, J3 was healthy but quickly out growing his plumbing, the cardiologists and the surgeon decided it would be better to proceed with the Fontan, the final surgery in a three part series. This went better than expected. However, I want to back up some.

            I have learned to trust my instincts when it comes to my children’s health. I knew we were approaching this phase of J3s care even before our last clinic visit. I had hoped to push it off to the summer, but it is far better to do the work while he has the energy to fight than wait until he is sick and struggling. I shed many tears, as did my husband, but it was my middle son, J2, who gave me an insurmountable level of comfort. He sought me out in those moments I needed to be alone. Knocked persistently when my door was shut. In his arms telling me, “Everything will be okay,” I found peace in his untroubled innocence. He above many who gave me comfort in my time of need forced me to reach down and remember to, “be still, and know that I am God” (Psalms 46:10). Did that mean that I felt everything would turn out great? No! What that meant was the acceptance that whatever was to come, things would be okay.

            I took my son to the threshold of surgery knowing that whatever happened, I would be okay. My family would survive.

            I am thankful that J3 went in and come out fighting. He fought the “goofy juice” that turned my strong little boy into bumbling comedic relief giving the situation. Surgery was both shorter and longer than expected. Two of the major concerns is the stopping of the heart and brain damage. There was a great since of relief to find out that his heart started by itself. As for the brain damage, well, we knew he was okay when he asked for pizza coming out of anesthesia. We returned home ten days later.

            Of course, we returned to two sick children, and have been passing around a number of illnesses for the past three weeks.

            I am thankful for my mother-in-law who came down and stayed for three weeks to take care of the older boys. For the church members who made her feel welcomed. I am thankful for the prayers and support we received during this time of turmoil. I appreciate my teachers, who allowed me to be absent, and the teachers of my children, who were understanding when they began to act out. I appreciate my mother who listened to my fears and rants and coming up for the heart cath just in case we ended up having to stay in the hospital at that time.

            I am a thankful person and hope that the next time I see the inside of a hospital will be many decades from now.

Palliative Care: The Hospital Again

J3, my youngest, has been turning purple and breathing heavily. His pulse/ox has dropped about ten points. We took him in to see the cardiologist and my fears were realized. Although he is a year younger than we originally discussed, it was time to process with the third round of surgeries. Did we know it was coming? Yes. Were we ready for it? No. Do I wish we could postpone it until this summer? Yes. Do I think we will be able to? No.

            I start school again in a little over three weeks. My older two boys go back to school in a few days. We are terrified. Why we? Because my husband is by my side. This time I am determined to remember this. At the mere mention of returning to the hospital I break down into tears. Why? Because every time we go in with him, there is a chance that we will not walk out with him.

            His first surgery is on Jan. 5^th. It is a heart catheterization, which will tell us exactly how things are going and determine how soon we need to do surgery. Personally, I would prefer now. I would chose to get it over with rather than have it hanging over our heads and the semester. I might miss a week or so of school but it is better than missing during midterms or finals.

            I realize that this sounds selfish, but this disrupts the lives of my other two boys as well who have to live without their parents, but at the same time continue their educations like nothing is wrong. Of course, that is asking too much. I understand that they will act out and they will have earned that right to voice their disapproval with the situation they have zero control over. This disrupts my mother’s life who will drop everything so that she can come down here to care for the children in my absence. The life of my father will change when he can no longer come home to his wife. And it disrupts my husband’s life who has to balance work and the hospital, being by my side as well as our son, but also needing to collect a wage to feed and house everyone.

            We are not ready for this, but we will be packed for more than just a day trip if necessary.

            I wrote that to be released on Jan. 4^th, but I got side tracked by the sheer number of things that needed to be dealt with. I have zero plans to hash out all the details. However, the end product … was a continuation of where we already are.

            The heart cath went great. J3 is doing better than we expected. They are supposed to discuss his case either today or next Monday and schedule his Fontan procedure. Are we nervous? Of course. But once again I have reached the peace that comes with “God’s will be done”. I hope I get a long life with my son and I will love to give all the happy go lucky news, but the facts are:

1)      J3s heart is unbalanced. One side works twice as hard as the other. It will give out and he will need a heart transplant. The doctors told us this at the start of everything. If we are lucky we will get ten to twenty years before this happens.

2)      The Fontan will fail. This we did not know. There are some indicators to watch for but even the doctors do not know why or when it will fail. It could fail within the next six months or it could fail twenty years from now.

3)      We are blessed to have him in our lives and while he is fighting we will fight with him. We will give him the best life we can and as his is a very happy boy I can only assume we are succeeding.

This is yet another aspect of our lives. I am preparing for school. The older two boys will continue school. My husband continues to work. And for those moments when we can come together and etch out meaningful time together we do.

Palliative Care: Part 4

            There will be more surgeries. At least one that we can count on, the Fontan, but it is, hopefully, a couple of years away. Still, our last visit with the doctors and trip to the hospital was comical. After all the stress we went through just attempting to have some semblance of normalcy, we walked into, well …

            We thought everything was going great. Our little man was full of energy, rambunctious, and working on trying to keep up with his brothers. So when time came for our six month checkup, I was ready for it. We went in Friday for the ultrasound, J3 was a champ, and we continued on with our weekend. Wednesday rolls around for the actual doctor’s appointment, they only come down to the clinic once a week, all five of us are chilling in our room when the doctor walks in.

            “So, have you decided to have the surgery Friday or wait until Monday?”

            We were shocked, having no idea what he was talking about. The doctor quickly realized the problem and explained that the archway that had a last minute procedure done to it during the bilateral Glenn was kinking and causing a drastic blood pressure difference between his upper and lower extremities. I should mention that he is always a little purple so we didn’t notice the difference. The doctor explains that they want to do an angioplasty to fix the problem.

            I call my mom and the decision is made for Monday. We have to go down Sunday to do all of the pre-operation procedures. We get a hotel for the evening and are back at the hospital early the next morning. At this point I would rank us as pros at dealing with the hospital. We take him to the back, they put him to sleep, my hubby and I go get breakfast and we wait.

            “Well, the procedure went great.” I do a little mental dance and cheer. “Unfortunately, it didn’t work.” Well, crap.

            The doctor explains that they want to go in through the side so that they don’t mess with the heart because it is working perfectly, as perfect as it can work, but that it will have to wait a couple of weeks until he recovers from the angioplasty. And it is at this point that my son shows just how strong he is.

            By the time he has recovered from the anesthesia, he is already standing up in bed. The nurse is doing the best she can to keep him preoccupied and sitting down. The surgeon comes down to check on him and decides that since he has already recovered so well, they can do the surgery in a couple of days. This works for us so that my mom doesn’t have to leave and then return two weeks later. The drive between us and where she lives is a ten hour drive. My hubby and I spent two days trying to keep our son happy. The nurses have brought in enough toys that our room looks like a play center.

            Wednesday comes and J3 goes back early. Hubby and I have breakfast, take a walk, and wait. The procedure went great. J3 is now more part cow. This is a personal pleasure of mine. I love cows and he has cow grafts because there is a less chance of rejection. So, now my son is part cow. :squee:

            First day out of surgery and he is already sitting up and spinning in circles. The poor nurse spends more time untangling J3 than anything else.

            Second day out of surgery and J3 is now actively trying to remove his cannula and Foley. The doctors decide to discontinue both. If he makes it through the night without any issues, they will pull his lines and downgrade him to intermediate which makes my hubby and I responsible for his care.

            Considering everything we went through during the first seven weeks at the hospital, everyone is surprised by his size, his amount of energy, and his recovery time. In a single week, he was prepped, went through two surgeries, rebounded from both, and was discharged.

            J3 is resilient, happy, and loving. He is smart and curious. He is my daily reminder that God exists and is amazing.

Because They Love Me

            I hope you have read the posts for palliative care since this is a continuation from the other side. I have written about the diagnosis and hospitalization of J3, part of the story anyway. I have mentioned that while my focus was completely on J3, there is a J1 and J2 at home, who are being cared for by Nana, my mother. I am ashamed that during this trying time they were not on my mind as much as I feel they should have been. I am ashamed that although I left them in the care of my mother, they were not my main concern. I am even more ashamed that during all of this time I was inattentive to what my husband was going through. This post is retrospective from the pieces I collected after the ordeal was ending.

            My husband and I knew J3 was going to need surgery and the time was quickly approaching, but we were unprepared for the day when the hospital called and told us to bring him in. My mother, who had already agreed to care for the children while we were at the hospital was on vacation when we got the call. She had two days to get home, do laundry, and repack for an undetermined amount of time. I can say now that it was a blessing that she retired right before J3 was born. I’m not sure what we would have done otherwise. Unfortunately, we had to leave for the hospital before she could make it down to be with the boys. The time gap was about six hours, which turned into eight due to bad weather. Thankfully, a friend the boys love and trusted was willing and able to watch J1 and J2 during this time.

            At first, the boys were thrilled to have Nana replace Mommy and Daddy. No doubt plenty of rules were broken during this time. It took about a week and a half before J1 refused to talk to me on the phone. Even when we Skyped, he refused to look at me pretending I wasn’t on the screen. I know this behavior, it is a self-defense mechanism to protect ones-self from being hurt. J2 was not as bad.

            At week three, I was able to come home and visit for the weekend. J3 was doing well and I felt confident in my leaving him. I knew I was only getting two days with the boys and I made the most out of it. Donuts for breakfast, the park, our favorite fast food place, a few errands and an evening at home before church and now I have to leave. The change was immediate, before I even left the house they knew. J1 shut down unwilling to even say goodbye. J2 threw a fit that was just the beginning of his aggressive behavior to follow for the next four weeks.

            I didn’t fault either of them. J1 was in a self-defense mode. J2 was attempting to exert what little control he had over his life. But I didn’t really have to deal with this behavior, my mother did.

            Nana was a hard woman to grow up with, mainly because of her authoritarian parenting style, and my transference issues. She knew me and I knew she could handle anything that had to be thrown at her. I didn’t bat an eye at the idea of her taking over my household. However, she was sixty-three and suddenly thrusted into a situation where she had to be a single parent. Sure, my husband was home during the weeks we didn’t have major issues going on, but he spent most of that time working. Yes, he spent a couple of hours at night playing with the boys, reading and putting them to bed, but I have no doubt that my mother still fed and bathed them at night. After they went to bed, I am sure that my husband turned to his computer for a self-soothing evening. Neither of us really thought about how she was doing.

            My mother would later tell me that the situation was isolating. She got little sleep. One night J2 had crawled under her bed to sleep and she was unable to find him. Her stress level was through the roof. She didn’t have the team of pastors or social workers to help her through a meltdown. Yes, people visited and brought food, but it isn’t the same as having a break. Thankfully, one of the women at church was able to get two extra car seats through a program at the local police station for her so that she could leave the house.

            I felt bad for them, all three of them, but only after I was already home and knew everything was fine. Still, there is one person who through all of this suffered right beside me. Stood as a rock and did not falter until I accused him of moving on without me. He continued watching our shows without me there. He played games every night he was at home sleeping in a comfortable bed. He eked by with what support he had and broke down only when no one was watching. He suffered right beside me and I was oblivious to it because I was wrapped up in my own pain. He did this because he loved me.

            My husband suffered in silence because he loved me. My mother suffered in silence because she loved me. My father suffered in silence because he loved me even to the point of taking a three day vacation to drive up to give me a hug, say hi to the latest grandbaby, and visit his wife and other grandsons. J1 did his best to protect himself from a new sense of loss because he feared losing me, because he loved me. J2 became self-asserted and demanding, because he was thrust into a new situation where I was not a part of his world and he needed to feel some sort of control on his life. I would like to think that he did this because I taught him to be self-sufficient, because he loved me and knew this is what I would want. I am allowed a level of self-delusion.

            It wasn’t until everything was fine in my world before I opened up to see how everyone else had weathered. It was an introspective moment that pointed to my selfishness. All because they loved me.

Palliative Care: Part 3

            Part Two of Palliative Care was about the rollercoaster ride of J3s first month in the hospital. The story began with failure to thrive. Continued to the DKS procedure with a follow up of oxygenation issues. And explorative surgery landed him on a bypass machine. Despite all of that Part Two ended well.

            The next five days moved remarkably fast. J3s chest was closed. He was taken off his ventilator. His Foley was removed. His arterial line was removed. He was breathing 21% oxygen, so they wean his pressure until he came off oxygen completely. They removed an RA line and prepped to remove the other the next day. Also, and most important to me, I got to hold him. When he finally realized what was going on, he started to smile and coo. It was an amazing feeling. 

            After a month of being in the hospital, J1 and J2 are coming to visit me. We had an amazing weekend at the zoo and other children friendly places. While it was sad to see them leave. I was rewarded with the most amazing gift. J3 was being downgraded from ICU to intermediate care. I get to room with him again. I get to hold him again. I get to be responsible for his care again.

            The doctor informed me that the real work will now begin …

            As if what we have been through hasn’t been hard enough.

            What the doctor meant by real work was that J3 had to learn how to eat, a skill that most people take for granted. J3 quickly became physically exhausted after five milliliters of formula. Building him up to drink four hundred milliliters, which was the minimum limit for his release, was tedious and time consuming.

            J3s feedings were every three hours. I was supposed to feed him for fifteen minutes as much as he could imbibe and repeat the process. For two weeks, I warmed his formula. Measured every milliliter he drank. Prayed that he gained weight. For two weeks, I slept thirty minutes every three hours if he would sleep long enough for me to sleep. After a week of this I locked myself in the bathroom and cried while J3 screamed angrily ten feet from me. The nurse came in once I emerged and ordered me out of the room for an hour. I was able to eat a hot meal for the first time in a week. After a week of prayers, he started gaining weight and eating just enough for the doctors to release him.

            Finally, after seven weeks of being apart from my family we were together again. We lived month to month waiting to return to the hospital for his next stage of surgeries. It came in April, right after Easter. Honestly, I can’t remember much about that stay. I remember the surgery went well. I remember he didn’t suffer as badly as they had expected. I remember returning home with a happy semi-healthy child within the week they had told us even though I had prepared to be there longer. I remember being home for four or five months before the unexpected happened and we were back at the hospital. But that is another story.

            I will say that I walked out of this experience with a deeper faith and trust in God. Even during some of my darkest days since then I cannot look at J3 without being reminded that I am blessed.

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.

Palliative Care: Part One

            For most people, bringing a baby into this world is a miracle. Rarely, do the horrors of pregnancies going wrong hit the media. So, what happens to those parents, who suffer behind closed doors?

            First of all, my heart goes out to people who suffer in silence. I was lucky to have several communities come to my husband and my aid: our church community, friends, family, and my husband’s work. Second, we ended up at an amazing hospital where we found even more support from other families going through the same thing, most of the time, far worse.

            My pregnancy was difficult. My diabetes near impossible to control. I nearly miscarried in my second month of pregnancy. It would be a lie to say that was the scariest feeling I have ever experienced, but that is only because what was to come was downright Earth shattering. The pregnancy never felt right again. But, all pregnancies are different, right? I tried to convince myself of this, however, nothing was ever quite right. The heartbeat was always … off. We did extensive ultrasounds, I was told that nothing was out of the ordinary. Who was I to question a doctor, a medical professional? They went to school to learn their craft. I can’t even get my bachelorettes degree.

            The caesarean was scheduled for thirty-eight weeks. Thirty-six became stressful. That feeling that looms within someone who can feel something not quite right. An indescribable feeling that I will never be able to put into words. I wanted the baby out. I was worried. The doctor convinced me that the baby’s time growing inside me was more important, that there was no indication that anything was wrong. So I waited. Painfully. Stressed. Concerned.

            I couldn’t wait to see my son. All of my concerns slipped away as I prepared for the caesarean. I felt the final tug letting me know he had entered this world and I waited for the cry. I listened for any sign that things were okay. I listened for signs that something was wrong. I prayed the Lord’s Prayer when there was no sign of either. Finally, after far too many seconds passed he cried out. Tears of gratitude flooded me as I prayed out in thankfulness.

            I was overjoyed to hold my son. I was fine. I was holding my precious baby boy.

            It did not take long for the feeling of wrongness to creep back up. My precious baby boy did not want to eat. We tried breast feeding, unfortunately, he ended up on a feeding tube. It was a long eternal nightmare. The doctor insists that it is important that he sees his pediatrician within the next week when we are discharged. I keep this in mind, but I am just happy to be able to return to my other two boys. To start our new lives as a family of five.

            The next day I make the appointment for the end of the week. Not with my pediatrician, but with another one that I felt comfortable with. He hears a murmur. My heart skipped a beat. Air was expelled out of my lungs as I gasp for a grip on reality. I try to rationalize. No big deal, I was born with a murmur but I am fine. There is a whirl wind of tests, all that I believe to be a waste of money and time, but let’s be sure.

            A letter comes in a few days later. You have an appointment at Arkansas’ Children’s Hospital in Little Rock, AR.

            I missed the part where it was in Little Rock, Arkansas. Why, had we been referred to another doctor? Another hospital? I began making inquiry calls to figure out what was going on. I actually get a call from the Children’s Hospital. They have an appointment opening tomorrow, do I want it? What? No. Why is it necessary? What is going on?

            Several hours later I would feel like a horrible mother. The doctor finally calls. “There is something wrong with your son’s heart. He has been referred to the Children’s Hospital.”

            Let me sum up this experience with: I should have known. I did know. I feel like a horrible mother. I feel like I single handedly jeopardized my son’s life. How? I can’t really answer that. Why do you feel that way? Because I knew. I pushed away my concerns and moved on.

            This was a month of horror. A month after that, a friend of mine would be taking care of our older two boys, while my mother rushed up from Texas, as my husband and I drove our two month old son to the hospital for losing five ounces in one week. They call it, failure to thrive.

            This is where our story begins. All of this happened six months ago. We are coming up again as we begin our youngest son’s second round of surgeries. He will have one more after this, but this is in no way curative care. It’s palliative care.

E. Schierschmidt