Restful Monday for Nolan

I can't believe that after 2 nights of good sleep I am STILL exhausted! I am pretty sure after tonight I SHOULD feel human again. I am also going to try to work out and get back on track with taking care of myself. As I type this I can't stop yawning!

Nolan had a good day. Actually, Nolan really slept most of the day. They put him back on his sedation regimen which he was on prior to transplant, and we are thinking he really doesn't need such high dosing. I am assuming starting tomorrow the weaning process will begin. When I came in this morning they had removed his arterial line and his feeds were going OK. After

rounds they decided to continue with the feeds at a continuous low volume and once a certain amount is done, they let his belly rest for an hour. He is tolerating the feeding and the medications being put through his feeding tube, so that is good. They removed a line that was in his neck (jugular), so I think now he only has one peripheral line in place. A lot of meds were taken off today. Currently he is on two antibiotics, two or three anti-rejection medications (two of which he will be on forever), three sedation medicines, some potassium from time to time and I am totally missing a few others. Earlier they turned off his pacer wires and his heart was beating completely on his own. He looked well, was perfusing appropriately, however, he stopped urinating. They used a catheter to remove the urine and turned his pacer back on so his heart would beat at a steady 130, and he has since had wet diapers. They just think the heart is not beating hard enough to properly function the kidneys, and this is due to his heart being smaller and it learning how to work for a body Nolan's size. We had an echo today and one of our transplant doctors, Dr. Miller, says that his heart looks amazing...as much as said, "perfect." They do not mind that it is smaller, in fact, we were told they would rather them be smaller. Not only that, his new heart is his exact blood type - so, it is the perfect heart. We are lucky and thankful.

Other things from the day, they did an echo, which went well. He had an ultrasound of his liver to make sure it was functioning properly, which it is. SO, I think all in all we had another good day! He still has his drain in from his chest, but I think once that is removed and his heart is functioning totally on its own, we will be on our way to the 8th floor! Probably by the end of the week!

OH! I did get to hold Nolan today. Our nurse even slightly held him in an upright position, which just looks so amazing to me. We are so close. Especially once the drain is removed, which may be tomorrow!

I think I covered everything. You know, it's odd, because a part of me is really going to miss the nursing staff and the doctors. I know we may see some in the future, but many of the CICU and 8a nurses have become close to us, and they have truly done so much for Nolan! Once Nolan is a little better I am going to start getting pictures with all of his nurses, CRNPs, PAs, physicians, transplant doctors and his surgeon, Dr. Pete Wearden so I can keep all of these wonderful people in our memories forever. Some of these doctors will be able to see Nolan grow and thrive - and whenever we are in Pittsburgh I will have to make sure to stop by and see everyone.

UNTIL THEN - we have a lot of work to do here! BUT, we are happy with our progress!

We are off to bed. Thank you for all the continued love, prayers and support!

#nhos
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1/23/14...Heart Day 1/24/14