13 Hours

Jax has had 2 major surgeries prior to this one but this one was different. We made it to the hospital around 1:30am Thursday September, 20th. Jax was able to eat, and drink until 5am. He also went and had an x-ray done as well as blood work. After 5am he wasn’t allowed to have food or water and he actually stayed asleep until 9:30 or 10 am. Around 12:30 pm they came and got him to take him down to Pre-OP. There his dad, my sister and myself waited with Jax. Then my two besties Aimee and Allison showed up and we all laughed and played with Jax. Around 1:30 they came in to get Jax ,we kissed him, told him we loved him and off to the OR he went. I sat in a very cold waiting room for 13 hours. For the majority of the time I had friends and family there and they were a good distraction. A distraction that I needed. *Shoutout to my bf Chris who never left me no matter how emotional I was getting* I do have to say the updates I was receiving did not make my already heightened anxiety any better. PSA( It may not have been that many phone calls but dangit this is my story) The first call was a hey we have Jax on anesthesia but there has been a delay with the heart but he is doing good. ( I am thinking oh okay my high risk child just chillin on anesthesia with his coronary artery and mild to moderate regurgitation, ok great). The next call was ok they are finally on the way here with the heart ( it was raining and lightening so the helicopter could not land) so we are about to start opening him up. A few hours later we get the call that they are about to place his new beautiful heart in. Another few hours ( and by few hours I mean 2 – 3 hours) we get a call saying that Jax is bleeding alot ( which we knew was a possibility since he had been ona blood thinner for years) and that they were trying to get it under control. The next phone call they let us know he has been put on ECMO(stands for Extracorporeal Membrane Oxygenation. Extracorporeal means outside of the body. A membrane oxygenator is a piece of equipment which acts as a lung to deliver oxygen into the child’s blood) for now just his left side of his heart but his right side as well. ( My thoughts : You’ve got to be kidding me, this can’t be happening) The 1 am phone call ( I’m delerious , I slept 3 hours since thursday morning) they tell me they are trying to control the bleeding and it is not looking ideal ( My heart is pounding and I’m upset..pissed ). So I blatanly ask if he is dying and the response is No. At this point they send out 2 sweet nurses that were trying to reassure me but the time frame they were giving me and the time I had just spoken with the OR nurse was not cutting it. At this point the devil was in my head , I was thinking everything negative that you could possibly imagine. Then an Angel appeared ( A very very sweet nurse who just happened to walk by, who I’ve known since 2013) She calmed me down, reminded me that Jaxson is a fighter but he also has never taken the easy route. She reassured me that he would be fine, that he was in God’s Hands. So after she walked away, I just remember lowering my head into my lap and just praying. I think I prayed until I was in a trance because the next thing I knew, I was calm, and my mindset was different. Then I hear ” You can come into the consultation room so the Doctor can come and talk to ya’ll”. ( She did not say ya’ll that’s just me lol) We get up and go into the coldest consultation room ever and wait. We waited about 5-10 minutes and he begins to tell us how everything went. He said that putting in the line they needed for Jaxson’s anesthesia went perfectly, putting him on bypass was perfect, opening him up was perfect, taking the heart out was perfect, putting the new heart in perfect. ( I’m sure you get my drift) He said he put Jaxson on Ecmo because he felt that he needed it and preferred to put him on Ecmo in a controlled setting vs thinking his new heart would work great then bam he crashes and now he would need Ecmo in a really not so good setting. So we understood. He also reassured us that it was normal for this to happen (for kids to come out on ECMO). That he could be on ECMO for 2 days or 1 month. In Jaxson’s case he was only on for 4 days. September 20th, I waited 13 hours ( I rounded down) to see my baby and when I did see him which was a little around 3am I was happy and sad. I was happy because he is here with us still, that he made it through that surgery, that his heart , his new beautiful heart was beating. But I was sad because I think it took 8 -10 people to bring him from the OR to his room in CVICU. I think it is important for me to Express how I feel during his journey,to see where he has come from, to see how God works. Jaxson is God’s miracle and neither one of them cease to maze me. I just felt like I needed to blog 😘

Until Next Time, Be Kind To One Another🧡💙

Kandiss🌻

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