Nolan had another great night last night. However, today has been a different story. It seems as though he is having some withdraws to pulling some of his sedation medication. He had a really agitated period where his heart rate was close to 200. This can be very dangerous for him because the left side of his heart beats very little and his right side compensates for this. With that said, they have him on medication to help wean him off of the sedative, and then was placed back on some heart medication to help with his ejection fraction. He also started some tube feedings today. This may be a cause of his irritability, but our nurse personally feels there may be some belly irritability due to the narcotic he is on to help wean him from the sedation.So - I guess not every day can be a good day. I do know that tomorrow at rounding they are going to take all of this into account and do some adjusting, keeping in mind if this trend continues we will be looking into becoming true candidates for a heart transplant. Today we met with several members of the heart transplant team. We meet with various players such as the transplant coordinator, the transplant physicians, surgical PAs, infections disease and psychiatry. We are currently doing this to start the process so if we do need to move forward with a heart transplant, Nolan is ready to go.
I have to remember that not every day is going to be a good one. We have really pulled a lot from him the past 24 hours so some steps may need to go a little slower. I pray that tonight and tomorrow go better - and maybe the doctors/nurses will have a better plan. And I have to also come to terms with the fact that Nolan may need a new heart, and if he does...that is OK. We just want to give him a chance at a life he deserves. All the kids here in this CICU deserve that (and anywhere else, for that matter).
On a side note, my Susquehanna Health family had a wonderful service for Nolan this afternoon. They have made a string of hearts with messages of love and hope for Nolan. We are so excited to see it and hang them in his room. I was lucky to be able to Skype in for the service and view for myself. All the love and support is overwhelming. It makes me feel good to know that whatever happens here, I know I have so many to lean on. We really thank you all for that.Lastly - we received a Amazon gift card, but I have no idea who it came from. If the sender is reading this, please contact me :)
PLEASE keep sending all the love and prayers.
Love,
Cori
Thinking of you guys daily, and sending positive thoughts your way! You are doing a remarkable job of being positive and strong throughout this process, and I am sure that Nolan is able to sense that as well. Anxiously awaiting more good news! Stay strong! Erin
ReplyDeleteI sensed something amiss that was something other than the heavy transplant talks. I'm sorry it wasn't a great day. Logically you know they're part and parcel of this journey, but it doesn't make it any easier when you have yourself one. Hugs, sister. Praying that tonight and tomorrow are much better. Love you.
ReplyDeleteHopefully yesterday was just a hiccup along the way and that the irritability was in fact caused by an upset tummy. I pray that today goes better and that as you said not every day can be a good day, so as long as you have more good days than bad you are heading in the right direction. Lots of prayers and love! Sharon
ReplyDeleteI'm sorry yesterday proved to be a little more of a challenge for all of you. I'm sure it is just a little bump in the road, and Nolan is strong enough to handle that. It makes me really happy, though, to see what the SH folks have done for you. I'd be right there with them if I were still working there. If you need anything, let me know. Lots of love!!!
ReplyDelete