Cliff, Dani and Cordelia have officially moved to Cincinnati.
I think most of you know this already, but Cincinnati Children's Hospital is one of the best in the country for Cordelia's condition (Biliary Atresia). As Cliff and Dani have said, in Buffalo Children's Hospital her needs are abnormal, they are rare and uncommon which makes them all the more tricky for the doctors (in their defense, the condition affects 1/10,000 children). However, in Cincinnati her needs are everyday practice-- they have an entire floor devoted to pediatric liver patients, particularly Biliary Atresia. In Cincinnati she is normal.
In the 3 weeks since they returned from Cincinnati (where they went in hopes of correcting the condition with a surgery that would have at least temporarily rerouted her liver to her intestines until she was a bit older, but where it was discovered that her liver was so badly damaged that it wasn't even possible) things have been chaotic and confusing for everyone.
Because of her liver failure (and some of her medications) Cordelia has started to retain a lot of fluid. She was surgically "tapped" once to help reduce the swelling, but within a week and a half her little belly was measuring larger (from retention) than when they first drained the fluid. It was becoming an incredibly delicate balancing act-- medication to reduce the retention which was causing a lack of potassium which was causing a need to go back to the hospital and be hooked up to an IV which was causing further retention...you can see how this was all going...
The doctors in Buffalo eventually said that she needed to be in the hands of the experts.
This past Wednesday morning she was airlifted from Buffalo to Cincinnati, OH while Cliff and Dani, bags packed, left home and drove the 7 hours to the hospital.
What a whirlwind of a week.
When they returned to Buffalo from Cincinnati the first time the hope was that Cordelia's body would be functioning well enough that with some assistance from Buffalo Children's Hospital and monthly check-ups in Cincinnati that they would be able to go about their "normal" routines until the time of the transplant at which point they would have gone directly to Cincinnati for the surgery and then would have stayed there for 3-6+ months after the surgery as she recovered.
Now, they wait in OH for a liver (could be up to 6 months? I will write a post about that process next week) and then the recovery time. No one is sure how much of this will be inpatient vs. outpatient time. They will either move into an apartment in a Ronald McDonald house or look for housing elsewhere (a lot of things are up in the air).
All that said, Cliff has had to take an undetermined leave of absence from his job (as has Dani), and while their insurance has been great about covering the medical costs (doctor's appointments, surgeries, etc.), it's quite staggering how quickly the non-medical but necessary costs can add up (needing a new car to replace the old one that was 'making due' at home, paying for either an apartment or the small daily fee for the Ronald McDonald House and the list will certainly go on.
 |
| Cliff feeding Cordelia |
Plans for a fundraising dinner are in the works on September 8th. If you are on Facebook look for "Benefit for Cordelia Faith Minter" to be added to the Facebook group list where you can get the most up to date news and details.
A friend of the family (Thanks Jonathan Ziders) has set up a website that works through Paypal to take donations as well:
http://cordeliafaithfund.chipin.com/cordelia-faiths-medical-costs
Also, in the meantime donations can be sent to my parents house-- email me at lisa.littlewood@gmail.com for their address if its on your heart to send a donation and you'd like to do it that way.
 |
| A sweet smile in the midst of the craziness. |
Thank you for all of your support and prayers. Please keep lifting this sweet family up by covering them with prayers and showering them with love.
No comments:
Post a Comment