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.

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.