Arwen's Hospital Stay Update

Arwen's you caring page
https://www.youcaring.com/medical-fundraiser/arwen-s-upcoming-hospital-traveling-expenses/69977


Here are some updates where we are in the process. We chose the Cincinnati program instead of Colorado due to their expertise. We finally finished the application paperwork process and did the initial phone calls with the nurses. We are now waiting to hear back to see what the plan of care will be.
Another Spina Bifida Mom did a great job of writing out how this all plays out.
Application Process--paraphrased to fit Arwen's journey

We contacted the Cincinnati Children's Hospital by email (you can get the contact info by clicking here). I just sent them a quick email asking for more information and then I had to complete a demographic form along with contact information for all of Arwen's doctors. The center also requires all of the following information (those that apply) before they will proceed with the application process. So, I had to spend some time rounding up Arwen's  medical records and copies of MRI's.

o Operative reports ( this includes all surgeries per Operative reports formed) 

o Cardiac operative report, echocardiogram report Cardiac operative report echocardiogram report echocardiogram report, and cardiologist letter cardiologist letter cardiologist letter

o Hospitalization D Hospitalization Discharge summaries ischarge summaries ischarge summaries

o Radiological studies Radiological studies studies (please send the actual radiology images on a CD) 

o Pathology slides 

Some of these  didn't apply to Arwen so we just the information we had. 

The program is offered once a month. The program starts on a Friday with a full day of information. There is a lecture in the morning (for the parents), followed by x-rays and a clinic visit. You have the weekend to yourself and then return to the center the following Monday-Friday. Even though the program starts on a Friday, odds are that your child will have to have more tests done a day or two before the session starts. We are also seeing Urology while we are there so waware unsure how that will affect how long we stay. So really the Cinci program requires about 9+ days. It's a commitment for sure.

We were hoping that we could stay at the local Ronald McDonald house to save on money,  but due to our family being so large they said they could not accommodate us. Thankfully we received a list of hotels that give discounts for patients.

Thanks for checking in!