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.

Food: Yummy and Dangerous

            It is important to note that I am NOT a doctor, or a nutritionist, or any kind of authority that could be considered an advice giver for health. I am, however, fully capable of discussing my experiences and the knowledge that I believe I comprehend as I understand it. Now, since that warning has been given, I want to discuss my struggles with weight and dieting.

            First of all, I have been overweight my entire adult life. I can give a multitude of excuses for this but the fact remains that some eighteen years later I am still overweight. Not just overweight but morbidly obese and that is my fault. Of course, saying that being fat is my fault creates a blaming and shaming scenario and this has got to stop. (This, however, is not the point of this blog.) Let me start with a few admissions.

            Admission number one: I am a compulsive overeater.

            Admission number two: I am an insulin resistant type 2 diabetic.

            Admission number three: I am a happily married woman with three very young children whom I would like to spend several more decades of my life with.

            I want to start with admission three. My husband loves me. Just As I Am. Of course, he is concerned about the health issues as a result of my weight and diet, but he would never tell me that I am fat. He won’t even suggest it. Hates when I refer to myself as morbidly obese. Unfortunately, children are honest, brutally so at times. They remind me often that I am large, fat, big, whatever comes to mind at the time. They are 5, 4, and 2, respectively.

            They are so young. I want to see my children graduate high school. College. I want to see them marry. I want to be able to enjoy grandchildren. Regretfully, this will probably not happen. At least, not if I don’t make some changes. Now. Like, Right NOW.

            Having said that, I can now turn to admission number one. I am a compulsive overeater. I know, some people eat because they just like food. Some people are happy with their size. Some people are healthy despite their size. Well, that is not me. And I am talking about me. I can wake up in the morning and say, I will not eat junk food today. I will pass over the yummy, yummy treats all day long and then suddenly have a toaster pastry in my hand. By the time I realize I am eating it, well, I have already eaten this much, might as well finish it. I don’t even like toaster pastries. Seriously, of the many snacks in my house, toaster pastries are one of my least favorites. So, why did I eat it? That is a great question. One that I simply do not have an answer for.

            I do like to eat. I like to eat away my problems, and by this I mean sitting down in front of the television with a feast of food and snacks and eating myself into a coma. I like to eat for celebrations and in this past month alone, there have been many. Valentine’s Day, my birthday, my children’s baptism. All of which I could have skipped the cake, candy, cookies, pies, and everything else offered, but I didn’t. Also, we had company for a week, she has dietary issues. Yes, I can cook around them, but I didn’t. We just ate out all week. Needless to say, despite being close to dropping below 300 pounds, I gained instead.

            Still, this year I am working on the motto of: No Harm. No Foul. There will not be any guilt this year. There are just going to be small changes from time to time that should eventually make a whole that I can be proud of.

            Sadly, a lifetime of poor diet and inactivity has resulted in type 2 diabetes. An insulin resistant type 2 diabetic. What does that mean? Well, it means that I cannot tolerate any amount of carbohydrates. The amount of inulin required to counteract a single carb is 2 to 1. So, for every 15 grams of carbohydrates, I have to take 30 units of insulin. And carbs are not just in candy and breads. They are in vegetables, processed meats like sausage and bacon, milk, fruit. Anything that your body breaks down into sugar is a carbohydrate. So stop eating those items.

            It should be that easy. Shouldn’t it. But as we have already covered, I am a compulsive overeater. Not just that, I am a sugar addict. Sounds funny. Hahaha. You’re addicted to sugar. I would never compare myself to someone trying to break a cocaine or heroin addiction. Unfortunately, I have woken up in the middle of the night many times, sweating despite the air conditioner being set to sixty-six, shaking uncontrollably, my heart pounding on my chest, my husband racing to get my monitor because at this point we know what is wrong. The level of sugar in my blood has crashed and I am going through withdrawal. A day or so later, the headaches will kick in, think caffeine headache level of migraine and then draw it out for a week because the only way to get past this is to push through cold turkey.

            Dieting is not easy. This is the point. If it were easy, there would not be a multibillion dollar industry promising quick fixes.

            So, what does that mean for me? Well, it still means exercise, diet, and trying to cut out diet sodas. It is both that simple and that hard.

            A few weeks ago I starting exercising, then I rolled my ankle. I needed to stay off of it. Wear a brace. Ice it down. A pitfall to be sure. I continued stretching during this time so that I would not lose my flexibility.

            I am currently watching my carbs as well. Sixty grams a day. I am attempting to replace soda with tea. Not the same substitution at all which is why I am struggling.

            Every overweight person struggles. Every person is different. Every situation is different, but this is mine. I will continue to change my diet slowly. Change the way I exercise. I know that if I continue making these small changes, sooner or later, I can be proud of what I have achieved. In a month or so, I will let you know how I am doing. I will tell you the changes that I have made. I will add some recipes I have found that work for me and my family.

            Through failure and success I will continue on.

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.

Baptism

            This past Sunday, my three sons were baptized. Not at all J3s decision, although when asked he did answer, “Yeah.” And I am fairly curtain that J1 only agreed to it because J2 was going to have it done.

            What started this event occurred Christmas Eve 2015. I stood up, leaving my sons with my parents and proceeded to partake in communion. The fact that J2 was left out of something, obviously important to a large portion of the church, deeply upset him. This, I was already prepared for. I used this opportunity to discuss baptism with my son.

            It went something like this:

                            

Me: Sweetie, it is not right to take communion without being baptized.

J2: I’m a big boy, I want to be baptized.

Me: Sweetie, choosing to be baptized is a big decision. It means that you understand that Jesus loves you and choosing to love Jesus. It means that you are going to try to be a good person and walk the path Jesus would have you walk.

J2: I’m a good boy. I love Jesus. Jesus loves me. Also, He made the worms.

Me: Okay, well, let me talk to Daddy about it.

            And I did. We waited a couple of weeks to see what would happen. Then one morning as we were getting ready for church J1 and J2 come in. J2 asks if they can be baptized. J1 simply nods his consent to wanting an answer to the question. Once again I explain that it is a big decision and that they need to be sure. J2 was jumping up and down as if my answer had been yes and he was ecstatic. I did the next thing I could think of. I made an appointment for our family to talk to our pastors. The resulting decision was that all three of our boys would be baptized together. The baptism was still weeks out and without fail, every Sunday, J1 or J2 would eventually ask if today was the day.

            Finally, the day came. Mother-in-law had already arrived. We went through an early morning rehearsal. I had explained, multiple times, the schedule for the day. Everything is going smoothly, at least, as smoothly as it ever does. J2 was running around, not loudly, but out of reach for me to be able to stop him. This is a new behavior that I have not yet figured out how to negotiate.

            Then children’s time occurs. This is the point where all the children sit in the front of the sanctuary and have the sermon explained to them in terms they can understand. J2 uses this time to crawl around and under the communion table. Usually, it is after this that the boys go down to the nursery and play. Not today though. This leads to the first melt down. J1 begins to cry. I carry him to the back and explain that because he is being baptized today he cannot go to the nursery. I add that if he would rather not be baptized I would take him to nursery. No harm. No foul.

            No, he wants to be baptized.

            As we return to the pews, I find J2 sitting as far away from everyone as he can get. This of course gives me easy access to him and I take the moment to pull him into the back as well. This conversation is a little different. I take him all the way to the back, through the choir room, and into a bathroom. I expect that a spanking is coming and a resulting screech of outrage to proceed.

           

Me: We talked about this last week and you are too old to roam around and cause mischief. I will not have it. Do you understand me?

           

J2: Now covering his backside, knowing that I am unhappy and that he knows better and deserves a spanking. Doesn’t actually say anything. He simply nods.

           

Me: Good, then you will return to the pew and sit down and behave or we will be back in the bathroom and you will receive a spanking. Do you hear me?

J2: Another nod.

            The culmination of our day arrives as the five of us are standing around the baptismal font with our pastors, an elder of the church whose family means a lot to me, and the children of our church. One woman is taking pictures for her mom who could not be present. Another is taking pictures to be helpful. As well as my mother-in-law, who is taking videos for my father-in-law, who could not be there either. Of course that is not the circus I am watching.

            I am watching J2 play in the water and then wipe his hands off on my backside. For whatever reason the decision was made to baptize J2 first. I didn’t even get to enjoy the moment as I see another melt down pushing the edge of J1s sanity. J1 realizes that the pastor is going to pour water on his head. He quietly removes his hand from the font and backs up beginning to shake his head.

            “I don’t want to do this.” He says in such a quiet voice that I am the only one who hears him.

            I reach out to grab his arm doing my best to get hubby to take J3 who I have been bouncing in my arms as he has already signed many times that he is done. Hubby takes J3. I lift J2 into my arms and hand him off to the pastor, who is already noticing the issue. Our other pastor steps in to attempt to keep him as dry as possible and to J1s everlasting credit his melt down is silent. He is passed off to the other pastor who is doing her best to dry and comfort him. My focus is on J1 and wanting so much to hold him and tell him how proud of him I am that I miss J3s baptism as well.

            This ends with the boys being lead around the church. J3 leads the procession in the arms of the pastor. J2 is waving to people smiling. I still have no idea what was going on through his mind. J1 is desperately holding onto my hand still patting his head from time to time to see if there is any water left.

            At the time, I was just so relieved that things went as smoothly as they did. Now, I can reflect on the idea that every year we can celebrate their adoption into an endless family of brothers and sisters.