CLARIFICATION

Please don't get me wrong. I know I've had various complaints about certain docs or certain aspects of Colby's treatment plan during this hospital stay, but overall, I LOVE THIS HOSPITAL. I think when you deal with a diagnosis as complicated as SMA, you'll always have different opinions on how things should be handled. SMA is tricky (and super sucky) because it affects each child so differently. You know the expression, "same thing, only different"? That's SMA.

Cincinnati Children's is one of the top 10 hospitals in the country, maybe in the top 5. After seeing how simple things get easily fouled up at "another local hospital" I can see that Cincy is a bar above the rest. I'm extremely thankful Cincy Children's is no more than a 2-hour drive. The docs here know more about SMA than docs at other hospitals that's for sure, and I'm most appreciative of that knowledge. They have saved Colby's life on more than 1 occasion. I have no doubt that if we stayed at "another local hospital", he would have been dead years ago. That's not being harsh, that's telling the truth. Many, many hospitals around the country are simply SMA ignorant, which is a shame. So many SMA kiddos pass away because the parents depend on docs who have no experience treating SMA patients. They treat and wean not much differently than their other patients. THIS IS WRONG, VERY WRONG!! Look at the SMA kiddos here in the tri-state area. Not only are we beating the "you're child won't live past 2" landmark, our kiddos are thriving and if you ask me, have a high quality of life. I think it's only fair to contribute a great deal of that success to the expertise and experience with the staff here at Cincy. That and the fact that there are some serious kickass SMA parents in Indiana, Ohio and Kentucky!! So proud to be a part of that elite group!!

Were mistakes made in the last 36 days? Of course. Doctors made mistakes and I made mistakes with Colby's care plan. I've had to learn a lot this hospital stay. I know more about PIP, PEEP, CO2, BUN and TPN that I ever cared to know. But ignorance doesn't fly with an SMA diagnosis so now I know and will do better next time (which will be a very, very, very long time, right)?

We've become very close to some of the staff on the PICU. Their kindness, concern, professionalism and humor helped us make it through a very difficult time. How do you thank someone enough times for saving your child's life? How do you tell them thank you for smiling, talking to us, helping us get what we needed for Colby and for our personal comfort? How do you thank a team for listening to your concerns, compromising and in the end working with you for a plan that is best for the patient, my sweet Colby boy? You can't. I couldn't write enough thank you notes or send enough cookies to the PICU staff to express how extremely thankful I am that they were here for Colby and my family. THANK YOU, CINCINNATI CHILDREN'S HOSPITAL PICU STAFF, for getting us to this point. Can't wait to get home and get on with our lives :-)