A little Insight👓

About 3 months ago I decided that it would be a great idea to get the people that I’ve been friends with for decades to all get together the weekend before my 30th birthday. You see I never really do anything for myself and every time that I do I either end up cancelling , not having a good time etc,etc. But this time I was thinking I’m in a different place in life , I’m happy with myself, happy with my man, happy where life is taking me so this trip will be great. So I thought you know I’ve never been to New Orleans so that’s where the destination will be. I text all my friends the details and then made plans for my brother and sister in law to keep Jax over the weekend . Some friends weren’t able to come which was completely expected. Others weren’t able to pay on time which added some stress but not enough to make me not go. So March 15th rolls around and I am ready to go. I mean I’m thinking about the beignets I’m going to eat along with the delicious New Orleans food. I think I had about 4 hours of sleep because not only was I excited about going my anxiety was high because this would be the longest I’d be away from Jax. But I knew that he was in good hands so I tried not to think on that too much. So we finally get on the road around 8:30/8:45am and maybe 4 hours in , I receive my first phone call from Jaxson’s nurse. I immediately roll my eyes. Not out of annoyance because she’s calling but because in my mind I’m like HERE WE GO! She’s telling me that Jaxson’s Milrinone pump keeps beeping and across the screen its saying down occlusion but she didn’t see any anything. At this point I’m thinking that maybe it’s the pump itself ( because it has happened in the past) So I tell her to switch the pump in hopes that that would solve the problem. This did solve everything for about 3 1/2 hours. My bf then calls and at this point I’m like what now. He tells me Jaxson’s pump is beeping yet again saying the same message. I had him turn the pump on and off, check the line to make sure it was twisted or bent and then finally I had him switch the pump again . It was still beeping! Im not there and my son’s pump is beeping and I’m running out of options. My sister in law was in traffic but almost there so I just had him clamp Jaxson’s broviac and put a cap on the end of it. I told him to turn the pump back on ( at this point the line is disconnected from Jax). I had him hit run to see if it would start beeping….. and it didn’t. This is when I started to panic because if its running perfectly not connected to jaxson then its the actual broviac that is the problem. I call my sister and tell her what I needed her to do when she got there. Which was to unravel as much of Jaxson’s broviac as she could and then to try and flush it to see if she felt any resistance or saw any fluid come out.At this point she hadn’t seen any fluid come out but It was hard for her to flush , almost like there was something blocking it. Which there probably was a clot there because if the milrinone wasn’t going through properly, it was allowing blood to travel back down which will clot. She said that she keep trying and would use heparin ( helps break up clots. She said she would call me back later. Now during the midst of this, I’ve probably cried 6 times and have had 2 anxiety attacks. We stop to get gas….get a breather, bathroom break etc. Maybe 10 minutes later we all get back to my car and it wont start. ARE YOU KIDDING ME? i tried ti start my car like 4 times and it wouldn’t start. I’ve never seen a check engine light, just had my oil changed so I just laugh. I laugh instead of crying because at this point I’m waving my white flag. We asked what seemed to be 10 guys if the had jumper cables. ( please don’t comment telling me i need jumper cables in my car.. I know , I will get them, this really is not the time 🙂 ) Finally someone gave us a jump and I went ahead and drove to the nearest AutoZone prepared to spend around 200 bucks on a dang battery. Once we got there I asked them to do a battery check along with my alternator. The battery was shot and the alternator also showed up funky. But the guy was like don’t panic, it could be because your battery is very bad that the alternator showed a lower number than it should. So we go in and pull up my info because he said the battery I had was from AutoZone . I had 3 weeks left on a warranty from the battery I had purchased around 4 years ago. Thank God was all I could say. It was all I needed to say. All of the stops we made had put us behind majorly. But yet again we were back on the road. We finally made it to New Orleans and I was exhausted. Mentally, physically, emotionally… I felt like a zombie. I didn’t want to eat anywhere, I just wanted to shower and lay down. But my friends weren’t having it. I showered changed clothes and met them at some restaurant. ( don’t ask the name because I don’t remember lol ) When I walked in they had balloons and everything set up in the chair I was in. I felt better at that moment. But then that was shattered within 30 minutes. Stephanie ( sister in law) called me and said that she saw blood coming from a small tear in between a repair he had. I immediately started to cry, I hit the table we sat at and then screamed Fuck. I got up and stormed to the bathroom to get myself together because I knew this meant Jaxson going under the knife yet again (the broviac he currently has had been discontinued so it couldnt be fixed), him being put to sleep, another hospital stay where you don’t really get sleep, where germs are, where not so good memories are. I knew I’d be going to a place that gives me the worst anxiety. Then I started to think, I will never ever do anything or go anywhere again because this…. this fear that I have somehow creeps its way in and becomes true. I went straight from the bathroom to my car . I didn’t tell any of my friends that I had to leave. I think one of them saw me walk to my car and she came outside to console me but I just started to cry again and say over and over this always happens to me , to him. I hate that he has to go through this.. why can’t he have a heart… my heart. I’d give it to him in a heart beat. So She went and told everyone that I had to go. I wanted to try to get a couple hours of sleep before I got on the road because I was sooo exhausted but that didn’t happen. I got on the road around 1-1:30 am . Around 5am I had to pull over to sleep because I couldn’t blink without passing out. I woke up around 6:30 am and resumed my drive. I made it back to Dallas around 10:30. My anxiety level decreased a little because I was now closer to my baby. I knew he was ok and just needed a broviac replacement but it’s not JUST a replacement. Jax has clogged arteries . His access is diminishing and he is a heart patient. The risk is higher anesthesia wise for cardio patients. All of these things run through my mind but I try to remain faithful and stay positive. I’m okay but still not myself. These past 4 days have been one for the record book. Even friends thought i was upset with them but I was absent… I was there but I was not present. When something is wrong with Jax I cant function, I don’t hear you if it doesn’t concern Jax. My stomach twists and turns, my head pounds immediately, my chest gets tight and I go somewhere else. I know my kid is strong, I know hes beaten the odds but he’s still my kid. I don’t want my kid to go through what he has been. I want to protect him even when I know I can’t. These emotions I feel, the frustration, the sadness , calmness is just how I deal with what i have to deal with when it comes to Jax. The upside to this is Jax is amazing and is doing great. Tomorrow afternoon they are going to try and get him in to have another broviac placed. I can always go to New Orleans another time maybe even with him. Even though it’s been a stressful weekend, I am thankful because it could’ve been worse.

Until Next Time Be Kind to One Another Friends😊

Kandiss🌻

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