So, Nolan had another day of progress. I am so happy for him, and I feel this sense of worry already lifting from my shoulders. Don't get me wrong, I still have moments where I have fear about his recovery, but, I do not really fear for his life anymore. Now my mind is on - I need to clean and disinfect the Ronald McDonald apartment, what is life going to be like when we get home, are we going to allow him to be around large groups, can Riley go to pre-school? That is where my brain is now wandering to. And again, I have to remember we still need to take things hour by hour and as they come. We will soon figure out our new normal!
Today they decreased Nolan's sedation meds; his clonidine and methadone. He seems to be OK with it, maybe a little agitated? When he is awake he is pretty whiny, however, he does have three incision areas in his chest that he just received four days ago. They did remove his draining tube this evening, so he is now officially tube free! All he has are his o2 cannulas, feeding tube, one peripheral line and his pacer wires. They are still pacing his heart, however, I think tomorrow they are going to work on weaning that down. He is on his last day of an anti-rejection medicine, and he will start on two others which he will take forever. He did some PT today...we sat him up, he tried to interact, but honestly he is so tired and sore. His color looks great, his liver looks better and they love his new heart - so we are doing well.
That is really the latest. I will definitely provide more pictures tomorrow!
Tomorrow is already Wednesday!
#nhos
teamnolan.weebly.com
1/23/14 - 1/24/14
Hi Nolan's Momma - my name is Tena and I'm a friend of Baby Faith's Aunt Angela (Jamie's sister). Ironically, my son also has a severe CHD. He is 2 1/2 and is awaiting his fourth surgery but is doing amazing! I cannot imagine this ride you've been on but I'm so thankful that you and the Gibson's have one another for support. The two of you truly can empathize with the emotions you are each going through. I am also a board member of the Saving tiny Hearts Society out of Chicago. I wanted to let you know that we just funded a second year of research for cadiomyopathy. Here is a link to an overview of the project.
ReplyDeletehttp://www.savingtinyhearts.org/research/awards/sheikh-arrhythmogenic-cardiomyopathy.html
God bless you and your sweet Nolan and I hope he is feeling much better!!
One more thing - my son was super sensitive to Morphine. He would get really agitated and they kept giving him more along with ativan. As it turned out, they gave him too much and had him addicted to it. On the next surgery, we switched to Dilotid and he did so much better.