Day Two Tuesday

Good afternoon! Day two waiting for Nolan's heart...

An early post today. Nolan had a fairly quiet night and steady day. My mom and I did our morning routine of waking up and getting to Nolan's room by 7 am so we can be here to listen in on the rounds. Then we went for a long walk - it was a nice morning.

So, here is what was on Nolan's agenda today. He still has the breathing tube. His o2 levels look better today, however they do not feel comfortable pulling the tube yet because he is not really working very hard over the vent. They are also pulling a pretty "creamy" secretion from his lungs, which they are not sure if it is from the rhinovirus that he has popped positive for or (hopefully not) some infection. Whatever the case may be, they gave him a dose of Surfractin which is a very powerful surfactant commonly used as an antibiotic. This should help clear his lungs, and in doing so, they will begin to lower the vent allowing for him to start doing more breathing on his own until they feel he is ready to have the tube pulled. They are hoping to have the tube pulled tomorrow.

Today he had an IV line pulled from his neck - he seriously has a PICC line (peripherally inserted central catheter) or an IV placed on every extremity of his body. I will list it for you starting from the bottom to the top. Pulse oximeter on his left toe, blood pressure cuff on his right leg, catheter in his...you know what, temperature probe (YIKES!), a VAD device coming out of his lower rib cage, PICC line in his right arm, IV in the left arm and an IV in his head. OH - and a tube down his throat and a nutrient line down his nose. Seriously, this little man is a champion. Anyway, one line removed! Hopefully a few more by the end of the day tomorrow.

What else today? So, because his heart was so dilated on the left side, the right side of his heart is a little compromised because it was being pushed for so long. With that said, his VAD is not filling as full as they like, so they have started him on some heparin to make sure that the blood will not clot and will give him more fluids. They are not concerned that there's any damage to the right side, they just are watching closely and expect it to resolve itself. I have provided a picture of Nolan's awesome Super Man socks (thank you Shaner's, Daugherty family!!) and the pump that is the important piece to the Berlin Heart. This is Nolan's left side of his heart right now. Pretty amazing. So, he will remain with that until his new heart comes. I would show you how the tubes go up into the lower part of the rib cage and internally is connected to his heart, but once things heal a little and Nolan is awake, I will provide that image. It is truly amazing the technology they have these days to help save people's lives.

So, today is a pretty good day. They will probably get a feeding tube placed later today or tomorrow morning so we can begin feedings. And I am hoping tomorrow we can wake our little man up and show those eyes to us all. FIRST, taking out that tube. He is not a fan. This also means they will begin to wean him from sedation - which is always interesting with him since he had pretty bad withdraw last time. :)

I have been reading more about cardiomyopathy and running into other people who have had family or friends that have experienced this disease. One family is actually from our area in Williamsport, PA. I wanted to share baby Ellie's story with you all. You can view her family's foundation page by going to http://elliesheartfoundation.org/. I look forward to connecting with baby Ellie's mom sometime soon. Their story sounds very familiar to ours, unfortunately baby Ellie passed away April 25, 2012. It saddens me so because this rare disease comes on with obvious no warning. And every day is a different story as far as the progress of this disease goes. We started out this journey thinking it was myocarditis, to maybe cardiomyopathy...to yes it is cardiomyopathy and how long has he had it or how did he get it...it seriously is like a House episode. Anyway, I do plan on supporting the cause and advocating for further research on this horrible disease. I would NEVER EVER want anyone to go through it. EVER. Thank you to Ellie's mom for reaching out to me! :)

Because Nolan has already had open heart surgery, they did do a biopsy of Nolan's heart. This MAY be able to tell us the root cause. For more information about children's cardiomyopathy, check out the Children's Cardiomyopathy Foundation's website, http://www.childrenscardiomyopathy.org/.

I have babbled a lot today. Sorry! Tonight I think my mom and I plan on going out for a nice Italian dinner. It is nice to get out of the hospital setting and into the real world.

Hope everyone is having a great day! Continue to send us those prayers :)

Love,
Cori