Coming home....

As is customary after the recoup time from the hospital stays I always try to post a few things about our experience. Sometimes they are good... sometimes bad. I honestly don't know WHO I write these things to... I think I write them mostly to get them off my chest and out of my head.

I know this blog is mostly family and friends, be they close or scattered throughout the world, but someday I hope that if even one of our amazing medical team is having a bad day, that they will google their own name and come across our blog. I hope that maybe some of the things written here about them will bring a small smile to their faces. I hope that they know that we owe them everything..... and that there are not enough words to tell them how we truly feel.

I just wanted to take a moment and acknowledge our TEAM of medical professionals. I am truly humbled and blown away by the care that my princess Kyleigh has received in the past few days, weeks, months and years. I have had my doubts about Kentucky Children's Hospital and UK and I have always felt that Dr. Joe Iocono would be the only reason why we would come back to UK vs Cincy. I have to be 100% truthful in saying many months ago... Joe was the only reason why we stayed here in Kentucky for ANY of Ky's care... We were very confused and just trying to do the best for Ky by finding "the best" all over the country no matter where they were. He told us that we needed to make a decision and that we should try and manage the majority of her care in one place. It really struck me... he was right (as he so often is). Yet, I truly believed that seeing HIM would be the only time we would ever step foot back inside UK. I have now found enough reasons ...

I never thought that I would find myself saying this but coming back to Kentucky Children's Hospital was like going home. Walking those halls there were so many familiar faces.. so many familiar things and sounds and sights. We have our favorite child life girls, nurses, doctors, even our favorite food service guy who asks how our day was at dinner and leaves us breakfast if we are not awake yet in the mornings!! These things, familiar faces, are comforting in ways that the mind cannot explain.

When we went to Chicago we thought that we would find all the answers. We thought that it would solve everything that we would have some miracle cure for Ky. We went straight to the best... and Dr. Frim, I still believe, is one of the most well respected neurosurgeons specializing in early childhood Chiari, in the world. After our visit we were able to find out that our insurance WOULD have paid for Dr. Frim... we could have gone back there for her surgery, but the day that we walked out of that office we knew... he was not IT.

Dr. Robert "Bob" Owen

And then we met Dr. Bob Owen. We were instantly comfortable with him. He was quiet and sure. He is a man of few but poignant words. He is one of those people that when he speaks the whole room listens. He was not what we were used to. Troy and I are anything but "of few words" and quiet will never be found in the same sentence with us! Little did we know that Bob would be just what we needed. Even through the three months that we had to think it over, I was still unsure. I just felt that if we had passed on "the best" how could anyone else measure up. Now I know. I cannot tell you what it means to me to KNOW beyond a shadow of a doubt that we could not have found a better doctor or hospital anywhere else for Kyleigh and for this surgery. Not only did Dr. Owen perform a beautiful surgery for Kyleigh the time and care that he showed both myself and Troy as well as Kyleigh is a true testament to him.

So... in case you ever stumble upon this small piece of our world ... here's to you Bob:

Dr. Owen - "Bob" You have been truly great. We cannot tell you how much we appreciate you. You have been cool, calm and collected throughout this entire process. That is something we truly needed. We were very privileged to have you with us. We have never once doubted your abilities as a surgeon and knew that you would do an amazing job for our daughter and we were right. Thank you for everything.

Dr. Arundathi Reddy

Dr. Reddy - Wow... I don't know exactly what to say to you. I feel that our thank you to you should be something more significant than just a blog posting. You have been with us since the start. I remember meeting you in the NICU the morning of Ky's first surgery. I was so hopped up on pain meds that I remember very few things about that week... but you were the FIRST person to ever tell me that Ky would be fine... that YOU would take care of her.

I was so ecstatic to hear that you would be with us for this surgery. To be honest... when Pre-op called the day before the surgery I told them... if there is no Dr. Reddy... there is no surgery! I would have called if off too... !!! Trust is not something to be taken lightly and you have more than earned ours. I know that there is never any doubt when we hand Ky over to you. You have gone above and beyond for us always. But what you did in the PACU on March 18, 2008, will never, ever be forgotten. Those minutes and hours are things that we can never thank you enough for. You see its those hours and moments of extreme turmoil that we go through that truly defines a good doctor. Its those moments that when your experience can because a bonding moment or a day in hell. Watching you care for my baby girl for those long hours I could not help but thank god that it was YOU there with us. There are very few people that we would ever entrust those moments to and you are definitely one of them. You have been so incredibly caring and attentive. You have calmed our fears and anxious hearts. We truly appreciate and have the utmost respect for you. Thank you is not enough but it is a start.

Dr. Phil Bernard

Dr. Bernard - We were so privileged to finally meet you. I wish that it had been under better circumstances. We were glad to have you and your team to add to Kyleigh Amazing caregivers. You have been fabulous one more than one occasion and I truly appreciate that care and concern that you have shown for our princess and the amount of respect that you have given to us as her parents. THAT is something I cannot ever thank you enough for.

Dr. Joe Iocono

And of course there is Joe. Our dear Dr. Joe. Dr. Joe Iocono- What is there ever to say about him? How do you continue to add to a description of the one doctor that you measure everyone else against? How do you find words to tell someone about how his name has become synonymous in our special kid world with "the ultimate in patient care". Just yesterday I had a friend email me who is upset and changing doctors yet again for her daughter. She said to me, " fear that we will never find our Dr. Joe... I truly hope that our Dr. Joe is out there and waiting for us and that we can find him very soon." WOW... I think that says it all. Dr. Joe, the name, the description, the feeling, has become somewhat of an ICON.

I feel like a broken record when trying to tell you how we feel and how appreciative, thankful, and indebted we are to him. I truly wish that I had photos or video or something else of our experiences with him because one cannot understand what it is that he has done for us until you have been here with us to experience it. There are so many moments that will remain only in our minds that I so wish I had on film. The way he cares for his patients is something truly special and I hope that UK understands what they have found in him. There have to be hoards of families out there who feel the same way that we do about Joe. I know that truly great people are seldom acknowledged and rarely appreciated. I only hope that anyone who reads this can come to understand that our dear Dr. Joe is simply the best.

Joe... from the bottoms of hearts... a million times over... Thank you.

(great...... now I am crying........)

So here I am. A Kentucky girl who never imagined that her hometown of Lexington and our little hospital, Kentucky Children's Hospital, could ever be good enough for our daughter. We never thought that they would be able to offer her what she needed. We never imagined that it would measure up to a place like Cincinnati or Chicago. We were wrong. I am here to tell you... I have been to top Children's Hospitals and I have come home knowing that our hospital, nurses, and doctors are not "as good" as these other places... They are better, the best even. Today of all days I am so proud to say that my daughter was treated by the amazing medical team at Kentucky Children's Hospital. I am proud and humbled and thankful. Thankful that we were able to come home......