Wednesday, November 27, 2013

Heart Shaped Balloons

I have to give a shout out to my parents because today is their 37th anniversary! I have learned so much from them as parents and as a couple. The support each other, and of course their daughters, my husband, my kids, their friends, their parents, their friends family...you get it. I am so THANKFUL to have them in my life! I can't wait to see my mom and sister tomorrow...and then Riley, Matt and my dad Friday.

Nolan had an amazing day. I love that most of my mornings here start out with him waking up, looking at me and smiling. It's the best start to a day! I guess the morning actually started off to a questionable. Our nurse was doing her evaluation of him and he had a poopy diaper. She noticed that the stool looked like is had some red flakes in it (I wouldn't have even noticed), so she decided it would be best that the diaper be sent to the lab. She finished up her evaluation and morning meds...he looked great and no changes were to be made. Because of the blood in the stool they decided to get an X-ray of his stomach. The reading came back pretty quickly and showed nothing wrong, however, the lab results of the diaper did test positive for blood. The CRNP that was on duty suggested to pause feedings for the meantime until pediatric surgery could come up and evaluate Nolan. When they got to the room the team evaluated him, pressed on his belly and thought looked great. SO, for precautionary measures they are going to pause feedings for a week and start him on TPN and lipids. This is just in case there is some stress in the intestines that is causing the bleeding. Because he fully anti-coagulated he has the tendency to bleed more and faster. They absolutely do not want to deter anything that would result in us having to stop anticoagulation because he needs that for the VAD and if a heart were to come. I am all about being as precautious as need be. As long as he is receiving nutrition and the anticoagulants, I am happy.

The remainder of the day was perfect. He did great during OT/speech therapy. He allowed items into his mouth without much of a gag reflex. He knocked one out of the park during physical therapy. He was sitting up supported by the therapist and balanced himself pretty well, all things considered. Then we put him on his belly during tummy time using a Boppy pillow and he actually used his arms to pick up his head and moved it left and right about five times! Everyone was cheering...he was angry and crying, but working hard...it was wonderful. He has really recuperated well from the strokes he had about a month ago. I am so proud of him!

I had another crazy thing happen to me today. I was on the phone with Matt telling him about the feeding issues, and while talking I was gazing out of the window in Nolan's room. His room looks at a building that is connected to the hospital, a lawn and an old cemetery. As I was chatting I saw a shiny ballon the shape of a heart fly from behind the building. I was in the middle of a sentence and told Matt as I saw it. I mean...how strange is that?? A shiny, pink, heart-shaped balloon flying in my sight at the time I was looking out the window. Almost as crazy as the smily face I found on my banana the other day. I love these fun signs.

Oh, last thing. Nolan was lucky to have 4 visitors today! First, Laura Fisk (fellow heart mom) and the other Nolan stopped by to say hello. They were at the hospital for some appointments. It was Laura and Nolan's first time to meet our Nolan. It was really nice, and her Nolan is looking awesome! Then we got a visit from Rob and Alisa Zisman. Alisa brought Nolan fun pictures that spell out his name that we hung up in Nolan's room. It was great to see them all!

Well, I am off to bed. Happy Thanksgiving to you all! I will try to post tomorrow, but if I don't, no worries! My mom will be in around noon, then we are going to a Thanksgiving dinner for all heart families, after that Megan flies in...THEN the Steelers play! I hope everyone has a great day with their family and friends. I know we are not in an ideal situation, but I have so, so, much to be thankful for. Mostly, I am thankful for all the prayers, support and love we get from all our family, friends and complete strangers. You ALL have taught me so much! And I am thankful for a great husband...and two AMAZING children (and a dog that isn't so bad)! :)

ONE MORE DAY CLOSER!

#nhos
http://nolanheartofsteel.blogspot.com/
http://teamnolan.weebly.com/
BWW Fundraiser on Dec. 4

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