Thursday, November 6, 2014

Updates From Our Past Hospital Stay

Yikes! It is really hard to believe that it is November! I have been giving quick updates about Nolan on his Facebook page, Nolan - Heart of Steel, but I haven't really provided a nice, DETAILED update in awhile. Those that know me, I like a schedule and am a bit OCD - so I have carved out time each week to dedicate to writing this blog. I do enjoy keeping everyone up-to-date on Nolan...the good and the bad...but it also documents our journey so we can look back and explain everything to our heart warrior someday. I am sure he will be filled with questions when he gets older.

Anyway - THE LATEST.

Nolan was in the hospital at Williamsport Regional Medical Center last week from Wednesday evening until Saturday afternoon. It was nothing too major; he had been suffering from a cold the past three weeks, and I think around last Wednesday was the peak of this virus. He was having difficulties breathing, very rattly, fever, etc. We did NOT want to mess around given his history, so off the ED we went. Long story short, after many tests and blood cultures, they diagnosed him with viral bronchitis. Susquehanna Health's pediatric unit at Williamsport Regional Medical Center and Children's Hospital of Pittsburgh did an awesome job working together to make sure all the proper tests and treatments were being administered to Nolan. We are super grateful to have such a great support network.

We have continued to breathing treatments at home as needed, and Nolan is doing MUCH better. Not only that, he is eating like a champ (I think more than I do in a day!) Also yesterday he took 3 solid steps! I am pretty sure we are going to have a walker by the weekend. His vocabulary has really stepped up, as well. He is a talking machine (his own language, of course), constantly babbling and telling us stories. Milestone wise, he really seemed to develop significantly the past couple weeks. It is so great to see because I am always so nervous if he is going to have any deficiencies due to the strokes he had about a year ago.

Nolan was scheduled to have another biopsy this coming weekend, however due to his illness it has been rescheduled. We will most likely be back in Pittsburgh mid-December. Until then, we will visit our cardiologist at the Children's Heart Group of Hershey Medical Center and continue with lab work as needed. Our PT and OT are thrilled with his progress. OT is working less with him on eating because he has mastered that, and more on cognitive skills. We will find out down the road whether or not he will need any other specialty services.

So, that is really where we are at. The rest of the family is doing great. We are definitely into a routine and thankful for where we are at. I have been writing this blog for over a year now; I started trying to read what was going on a year ago...and I really can't. Those feelings and that life we had a year ago is still so hard to even think about. Life is truly a gift and so precious. Even we have to remind ourselves of that after all we have been through. I can honestly tell you that I feel like one of the luckiest people in the world to be surrounded by so many wonderful people - this is what I never want to take for granted.

More next week!


UPDATE: I wrote this yesterday and since then Nolan has successfully walked about 10 - 15 steps! So close! :)

Tuesday, September 30, 2014

A Year Ago Today

One year ago Matt and I were sitting in the pediatric ICU at Penn State Hershey Children's Hospital surrounded by a new world. A world that a week or so later would actually become some-what normal...and oddly comfortable.

A year ago today, a Monday morning, I took Nolan to our primary care doctor. I look back on how lucky we are now because our doctor got him in first thing in the morning. A 7:30 am appointment. Little did I know that by 3:30 pm my then 5 1/2 month baby boy would be placed on Life Flight. Death was near him. I look back on it now and I KNOW we were in shock. How could this be? How can this happen to us? These doctors are wrong!

Nolan - December 2013
A year ago today, if things did not happen the way that they did, I am not sure Nolan would be with us. From our primary care doctor who sent us to the emergency room at Williamsport Regional Medical Center, to the physician in the emergency room, the residents and nurses, the nurses in the pediatric unit, the girl that did our echocardiogram that immediately saw a problem, to the cardiologist who quickly made the decision to get Nolan to an establishment that could help him...ALL of these people were who made the first step to saving Nolan's life. I am forever grateful to every single one of them.

A year ago today our lives changed forever. We became a "heart family." Our life of fearing a common cold turned into a life of hoping we would just make it through the night. It taught me that we all TRULY do not know what tomorrow will bring you. THIS CAN happen to us. And we were determined to do whatever we could in this entire world to save Nolan. Money...never thought once about it. My family...that is all the mattered.

Nolan and Riley playing at our cabin this summer.
A year ago today Matt and I found a new part of ourselves. We realized how much you would sacrifice for your children. I would have done and still would do anything to trade places with Nolan. I wish I could take on all of his past pain and any other challenges that he will face. The fear of watching your child struggle is something I would never wish on anyone.

A year ago today we became new people. And I do believe for the better. I have high hopes for Nolan's future. All because of amazing people at Susquehanna Health, Penn State Hershey Children's Hospital and, of course, Children's Hospital of Pittsburgh. ALL of these establishments still care for Nolan both physically and emotionally. We are BEYOND blessed to be where we are today. I would have never guessed. I wish I could write more updates and post more pictures, but...HAPPILY...we are so busy being what we prayed to be again...a family. Days aren't always easy. We are still acclimating. We are still fearful at times. And in those times I do have to reflect to where we have been and where we are now.

A year ago today I never knew so many people could have love for one person. But now I see so many people within our community and Facebook that care DEEPLY for our little man. It's powerful and touching. I really hope someday he understands that he changed so many for the better. And because of him we have met so many people, rekindled old friendships, started new ones and really solidified where we want HOME to be.

A million thanks to all of you out there for being by our side and continue to be through our adventures. I will try to post when I can and DEFINITELY will try to be better with at least getting more pictures of Nolan up. He continues to do amazing. He is down to 1 - 2 feeds a day through his feeding tube, enjoys eating and is doing great at drinking water. He can walk while pushing his toy walker and I think he can say DOG. It is amazing to watch him grow and learn daily, and we are surrounded by an amazing team of nurses, OT and PT.

More to come on this adventure - I hope all positive. You are all very important to us. Much love.