The Smiles Continue

Wednesday, November 20, 2013

The Smiles Continue

Another late night for me - this seems to be the trend, one that really isn't me! (Usually I love my 9 pm bedtime!)

Well, LOVE to be boring, but Nolan is doing great! He still has occasional periods of agitation, but he is 7 months old, teething and hooked up to a VAD, so I would be cranky, too!

He did get his weekly series of tests done; EKG, echocardiogram and an ultrasound of his head. All tests came back without any changes, so that is great! In fact, his heart looks good. We are in no means out of the running to get a heart transplant, but they feel that he is all around very healthy and READY for this to happen. Because he is so healthy, if a heart were to come that they feel isn't "ideal," meaning maybe the donor had some issues with other organs or it wasn't his blood type, then they would deny it because he is stable and has the time to wait. If it were a "critical" issue, they would take a heart they would take a heart that could have a slight chance of issues. Sadly, these are just risks that come along with all of this.

So, to make this whole transplant situation more confusing, Nolan is able to accept a heart from any blood type. This is because babies do not have a fully developed immune system and have not developed antibodies to reject other blood types. This is called ABO-incompatible transplantation, and is only considered for babies under that age of 1 and is categorized as a 1A on the United Network of Organ Sharing list, which is the most critical. But, all of this is GOOD because it allows Nolan to have more options because his blood type is O+. This was all very interesting to us!

Nevertheless, the transplant team is optimistic that this all will be happening soon. They are so happy with his progress and where we are at from where we started. It is still, by no means, easy - but, I truly am so thankful we made it to this point! I remember a month back longing for the day to see this smiling face. He is beautiful!

Well, off to bed. Almost the weekend! ONE MORE DAY CLOSER!!

#nhos
http://teamnolan.weebly.com/

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About Nolan

Nolan was brought by Life Flight to Hershey Medical Center on the evening of September 30, 2013. Earlier that day he went to the doctor for typical cold symptoms and was then sent to Susquehanna Health's Emergency Department for further testing and breathing treatments. After having many tests done, an X-ray showed what was believed to be an enlarged heart. An ultrasound confirmed this condition and he was quickly transported to the Children's Hospital at Hershey Medical Center. It was believed that Nolan was suffering from a viral infection in his heart called myocarditis, which is an inflammation of the myocardium, the middle layer of the heart wall. After going through a series of treatments at the Children's Hospital at Hershey Medical Center and not showing any improvement, the team of physicians felt best that he be sent to the Children's Hospital of Pittsburgh of UPMC.

Nolan was flown to Pittsburgh on Friday, October 4. After several days of observation, Nolan was diagnosed with dilated cardiomyopathy. He was placed on a ventricular assist device (Berlin heart) which pumped the left side of his heart. Nolan spent 101 days on the VAD. He received the gift of life on January 24, 2014. We are forever grateful to his donor family for such a selfless act. As their lives have changed forever, so has Nolan's. They gave him a second chance at life.