Continued from Friday's Part I post...
Although this may seem like a rosy picture, it was far from that, and where the saying "living minute by minute" comes from. HLHS kids walk a fine line since there is SO much going on and changing in their little bodies and obviously, we are all human, and humans are trying to fix something we did not make. We are still learning the limitations to and how our bodies adjust to the many procedures required to reconstruct a child’s core anatomy as a result of HLHS. I mention this because we did experience a situation where our son was given CPR one week after his first open-heart surgery after what was referred to as a routine, uncomplicated procedure. I won’t go into details, but some simple things were overlooked and our son suddenly arrested, causing chest compressions to be required to safe his life. No one is real certain what caused our son to react the way he did, which for me only heightened my intensity. Luckily, it did work out, but was not a fun lesson to learn.
After being in the hospital environment for 6 weeks, we were finally headed home as a complete family. For me, I think my anxiety and focus intensified even more at this point. I was blessed to be a part of our son being born and to support him as much as I could through one of the most complicated stages of the HLHS reconstructive process. But now, we are home and I think for me there was a feeling of vulnerability, A LOT of fear and as the days and months went by a feeling of being on a deserted island with no real involvement with the outside world in either direction like we had a contagious life-threatening disease. I don’t think the isolation had as big of a direct impact on me as it did my wife, which ultimately bled over to me, to which I felt a deep sadness and some guilt; however, I felt it was my mission to lead our family through the war zone which included maneuvering through mine fields as we visited the required medical facilities for follow-ups, work, and keeping a safe germ-free zone from others since it was cold/flu/RSV season as well. I can’t say in the past I ever paid much attention to others’ hygiene, current state of health, how germs are and can be spread, etc… In short, I am now an obsessive compulsive hand sanitizer and/or hand washer. Especially when our son was little and I carried him a lot, I would not shake people’s hand during the flu/cold/RSV season. I have no idea where people have been, especially their hands, so to eliminate the risk altogether, I would just avoid the process and apologize later. This caused a lot of stress and anxiety for myself and those around me, mostly my wife. But, for kids with HLHS, catching just the common cold can be life-threatening since what we learned while at the hospital during his first surgery and have since continued to learn more about to this day, the respiratory system plays a huge part of the cardiovascular system, and if issues impede how this system works, it can have a detrimental impact to the heart and supporting arteries and veins. In reflection, I think the time between our son’s first surgery and a short time after his second surgery was as much or at times even more stressful then being at the hospital during a surgery.
After our son’s second surgery, maybe a couple of months, life was attempting to get back to normal, but I think I was fighting it. I still wanted to protect our son from any outside influence that could jeopardize his health. Of course, what is it the flight attendants say before when they demonstrate the safety features of the plane you are on? If we experience a decompression, masks will drop from the ceiling... please put one on yourself before you attempt to take care of your child. Guess that would apply here as well. I need to be in good mental and physical health to support and take care of our son and of course my family. Seems simple enough, right? I also think as the days and months went by, it dawned on me that I was having symptoms of all sorts of negative feelings, but mainly anxiety, fear, depression, intensity, and all the things that typically come along with these feelings, which resulted in me to not be my old self and unfortunately negatively impact those around me, mostly at home. This is where and why I correlate what we’ve experienced as going to war. It has and continues to be, even though I have made some progress, hard to exit this emotional roller coaster including the need to want to feel like you are in control, which you’re not. Definitely was easier for me to get into the mode to emotionally prepare for what we assumed we should be ready for than to decompress. Believe this is just a way for my mind and body to protect me from the severe ups and downs, but at some point I have to get off this ride.
Our son is doing ABSOLUTELY GREAT, which we are all very THANKFUL for and feel very BLESSED. He will still require at least one more surgery, which I’m sure won’t be fun merely because he will be much older and will more understand what is going on. As for my state of mind, I believe I’m in a much better place and get quite the enjoyment watching our son enjoy and experience life. I still get relapses of some of the old feelings, but am doing better learning to manage these feelings and coming to the realization that I won’t be the same person I was prior to learning our son has HLHS. For me, I think the biggest regret I have isn’t with how we supported our son or recruiting help from family to assist with our daughter so we could focus on our son, but rather the regret of not supporting my wife more positively from an emotional perspective. I believe the things I attempted to build around us to prepare for this battle was mostly beneficial; however, in hind sight, I do regret not doing a better job of supporting the emotional aspect of this journey for my friend, my partner, my wife. For that I’m truly sorry!
I realize even more now living through and experiencing this type of world will undoubtedly make an impact on you. The HLSH community is a small one, but a VERY LOVING, UNDERSTANDING and PASSIONATE one from the families to the medical professionals. I have found it is hard for others, family members, friends and co-workers to understand this world, which is to be expected. But we have found there is another family out there that does understand and that can more relate. I think for me, I’m still digesting all that has occurred, hence my analytical personality, and trying to learn what it is I can or should be doing after experiencing this world. It may be as simple as just loving and supporting our son and allowing him to experience as much of a normal life as he can while also loving and supporting my wife and daughter. For now, I’m choosing to LOVE and SUPPORT my family the best I know how, who are the people on this Earth that mean the most to me. If that is all this experience is supposed to teach me, then I ACCEPT it with OPEN ARMS!