Well, I made it through my first day back at work since our life took a major turn. I have to admit it was nice to be there and in a normal setting. My co-workers always find a way to make me laugh and are good to talk to about what's going on. It kind of set in that this is really happening while explaining it to my friends at work. I think I said a million times...this is just not real life! Driving home from work today I thought about how amazing it would be to get back to our house and see our Nolan in Colleen's arms and Riley playing in her sandbox. BUT, here we are. I think what is so hard is the not knowing what next week will be like...or the next 3 - 4 months. I do not do well with not having a "plan." I am definitely learning how to "go with the flow."
So, an update from Matt today. He said that Nolan had a good day. He still has his breathing tube but it is basically set to a point where Nolan is breathing over it. The respiratory therapist said there's a 50/50 chance he will come off tomorrow. The breathing trials are showing he is having better tolerance, but not 100%. They don't want to take a chance on him failing and having to re-intubate.
Currently, they are focusing on changing/weaning his sedation. He didn't do very well last time he was weaned off of sedation. The took him off of Precedex today. Matt says he actually saw him awake and not irritable tonight, so that is good to hear. The weaning process should take about 48 hours for each medicine. By the end of it he should also be off of his vent. The sedatives can also make coming off the vent either hard or easy. So, they are just being very precautious about everything.
The VAD is working well. It is showing no signs of sediments (clots) and is filling properly. SO, that is all good! I guess we are on our way. Matt and the nurses (and doctors) were very pleased with how he looked today, how he did during his breathing trials and weaning the sedation. Let's hope this trend continues!
Riley and I had a good night. I am exhausted, but focused my night on trying to get our house back together. It's been out of control since Nolan has been born! This has definitely been the most challenging six months of our lives. People wonder how we keep it together. Honestly, what else are you supposed to do? I could sit here and cry, asking the why's in life...trying to find someone to blame. But, nothing is going to change the situation we are in now. I can say that Matt and I are a great team in all of this. We definitely keep each other level and pick each other up when we are down. And Riley - she just brings joy to our lives and we have to continue to be strong for her. If we let down our guard what good are we to either of our kids? And of course, we have our family and amazing friends. I know I couldn't get through this without all of you.
On to another day! Like I said before, it is just a day closer to Nolan receiving his new heart and a new chance at life. We are grateful that we have made it this far.
Hope everyone had a great Monday and continue to have a wonderful week. Can't believe November is so close!
#nhos
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