Football Saturday

Hello from Pittsburgh!

I am happy to announce that Nolan is doing well and there's not really much to update. He is still sedated and weaning. (very slowly might I add) It is truly a fine balance. They had him off of oxygen a few days ago, but then put him on a very low flow just to help during sleep and sedation. Today they turned it down more, so he is on very little oxygen, is fever free, on full feeds through his feeding tube, on the Heparin and are trying to do some bottle feeding with the OT/Speech Therapist. He's really not interested in the bottle, however, I tried to feed him today while holding him and he took it in his mouth but really didn't do anything. So, they are encouraging us to use a binkie while he is awake to get used to sucking. It's hard because he is sedated and also being tube fed...so, he isn't hungry and is kind of loopy. Together that makes the concentration on bottle feeding kind of tough.

All in all, he has had a good day. I think one of their goals today was to rid completely of one of the sedation meds, and he has been good all day. He is pretty sleepy today...from what I hear he was up a lot last night having agitation towards weaning. But, his VAD looks great, he is still compatible to receive any blood type of a heart (they test this weekly, and I will go into more of that tomorrow or Monday) and he has been comfortable all day. I have also asked the head transplant surgeon about the biopsy they did of his heart to see if they can come up with any specific reason why this happened. So far everything has come back non-specific. I think we are going to go into some genetic testing in the future to make sure that this isn't something that we need to worry about with Riley...or Riley or Nolan's future children, or Megan, Blaine or Collin's future children (if they should have any); more on that, as well.

SO - Matt and I watched the PSU game today and since have been hanging with Nolan. He is pretty sleepy and needs to get as much rest as possible, so we will be heading to one of my best friend's sister's 30th birthday party (HAPPY BIRTHDAY, CORI!) It has been nice to hang out with Nolan and Matt...and have some time just Matt and I. Being apart is really hard, so I think it is important we take advantage and give ourselves some time, just him and I.

Riley went to the Penn State game today with my mom and dad. They sent us some adorable pictures I had to share with everyone. I love Nolan with all of my heart, and even more - but I also love this girl as much. She is totally my rock in all of this! If it weren't for her, I think I would have crumbled a long time ago! She is growing up right before our eyes, and I am so thankful for smart phones and technology so I don't miss it having to be separated from her.

Well, I am off to stare at Nolan a little while he sleeps, then head out for some dinner and birthday party. I hope you all are having a great weekend! I know everyone here is anxious to get the news that a heart is available. I think Nolan is on the verge of being more than ready! (AKA - healthy!)

ONE MORE DAY CLOSER!

#nhos