My amazing 5 year old has been listed on the Heart Transplant list as Status 1B for 671 days. This heart transplant will be his 2nd.
Status 1B: Dependent on intravenous medications or a mechanical-assist device – in the hospital or at home.
Honestly, it does not seem as if it’s been that long. The first time he waited was only for 9 months but he was admitted, on a ventilator, depended on a LVAD ( Left Ventricular Assistant Device) and also has a NG Tube ( feeding tube inserted through the nose, pass the throat and into the stomach). But I think since he had all of those thing each day we waited seemed like an eternity. !!Disclaimer: I am about to give my honest opinion! Mentally waiting for your child to receive a heart is draining. I am literally waiting for a child to die so that my child can continue to live. How horrible does that sound? It sounds bad but that’s just the reality. When I would hear tragedies, at first I would feel sad but then I would think I wonder if there were children could this be it? I know I sound like a horrible person but that is just where my mind went and I doubt that I am the only heart transplant mom to think that way. I would cry immediately after thinking that. Was I wishing a child would pass, absolutely not but when I would hear of natural disasters or accidental deaths, “Is this It?” would always creep into my mind. But having those thoughts, I felt like garbage . It’s not even intentional. It is just the truth, that is what just what happens. At a moment a mother and father will lose that child and while grieving I’m sure, they decide to donate their child’s organs to save another. I mean how selfless is that? Would that be on your mind during a time if sadness? That’s a question I hope I never do have to answer. This time around, it’s been 671 of giving Jax shots at 6am and 6pm everyday. Checking his temperature, blood pressure and heart rate are measured twice a day and his weight every other day. 671 Days of changing his milrinone bag and having dressing changes done if his broviac. Oh and let’s not forget the 16 ER visits for broviac repairs from them breaking, tearing or just not working. 671 days of anxiety . At one point he was breaking his broviac so often that if I heard a popping noise I would jump and freak out. Er visits weren’t short. Some times I encountered Drs that were familiar with broviacs and that would try to get us in and out and other times I would be there for 8 hours. So trust me that popping noise not only meant ” Can I get him to the ER fast enough so his line won’t form a clot and not be able to flush but it was also a ” Man I hope we aren’t here for forever and we have a Dr that won’t talk down to me because I’m just a Mom.” It’s been 671 days of watching my resilient little boy improve, grow up and develope his independence. I just lay Jaxson’s meds out and he takes all 11 of them like a champ. When it’s his time for his shot, usually the one at 6pm , he tells me where he would prefer it. 671 Days of him getting on the scale to weigh himself with No problem and then ask if I’m about to take his blood pressure. This Journey isn’t easy but Jax makes it easier. 671 Days of my son reminding me that it’s going to be ok. Thats backwards huh lol. It had been 671 days of having 1 Picc Line and 2 broviac placements. 671 Days of Jaxson carrying around his milrinone bag like a champ. 671 days of sleepless nights because sometimes I just stare at him in awe whilst checking to see if he’s breathing.Most importantly, it has been 671 more days of Jaxson’s life. 671 Days of me being greatful, and thankful because Some heart mom’s have been in the same boat as me but lost their angel during the journey. This is not me complaining because for Jax I would and will do anything but this is me telling you about my reality. Just as when he received his first heart transplant, he will receive this one when the time is right ! Until Next Time, Be Kind to One Another 😊