Day 94 & 95

1/16/14 - post from last night

 

Sorry I did not provide an update yesterday! My dad came into town and we went to the Pens game. It was hard to leave Nolan before he went to bed. We rarely leave Nolan while he is awake. I just don't ever want him to feel alone. So, I had a talk with the nurses and they assured me that they would keep a close eye on Nolan. He had a good day and night yesterday. I think any concerns I do have is that his heart rate seems to be on the higher side at certain times of the day. To me it seems like it happens before he needs his beta blocker medicine, which he gets every 12 hours. I let the head nurse and some of the doctors know, so we decided not to wean methadone today (we wean every 3 days) and we may tomorrow depending on how he looks tonight.

 

So, I can't complain. Nolan has had a good week. My dad and I had a lot of fun at the Pens game. We got to sit in a box and the view was amazing! The new Consol arena is awesome. It was a nice father/daughter night. And now tomorrow I get to hang with my WHOLE family. Riley and Matt will be getting here around 5, so I am super excited to see them. Riley is growing up so fast. She will be 3 in one month! I do not know where the time goes...and I need to start planning a birthday party!

Nolan had a good day. He did some physical therapy and was really putting a lot of weight on his legs! He is really strong so I am not concerned about him catching up on his milestones. I can't believe tomorrow will mark day 95. I am so thankful that his VAD pump is clean and Nolan is continuing to thrive. I just don't want anything to get in the way. My biggest fear.

 

I have had some people as me about Faith. She had a rough start to the week but is now doing better. We are looking forward to getting Riley and Laci together this weekend! Cohen is also doing better and coming back to 8a tomorrow! I am happy all of our friends here are having a good week!

Well, I am off to bed. I hope to bring you all the news SOON!

#nhos
teamnolan.weebly.com

 

1/17/14 - Tonight

 

Hello! Friday is finally here! Matt and Riley got here around 5:30 pm. We spent our evening with Nolan. He is doing OK. His heart rate continues to be on the higher side, so we think it may be due to weaning. We have only weaned once this week, and if his heart rate continues to be high we may put the dosage back to where he was comfortable. The nurses, physicians, Matt and I all agree we just want him comfortable and happy until he gets his new heart.

 

He had therapy today, but we basically focused on keeping him calm. So, we are hoping he has a good night. Nolan has officially been on a VAD longer than any other pediatric patient. Not really a statistic I wanted him to be known for. I am thankful he is doing OK, all things considered. This is all so tiring. More so the day to day worrying. I really have not had a solid night of good sleep in months. It's hard having the family apart. Tonight is nice. Matt, Riley and I relaxed in the Ronald McDonald apartment... the closest to normal in awhile.

 

Well, off to bed. Happy weekend!!

 

#nhos
teamnolan.weebly.com