By this time tomorrow we should be on, or nearly on, the plane to Philadelphia!
By this time tomorrow we should be on, or nearly on, the plane to Philadelphia!
CHOP is sending a plane tomorrow that should arrive around 1 pm. There’s a lot involved in AJ’s transport – from the ventilator to all of the pumps and machines… The CHOP team will likely have to unhook him from all of UIHCs stuff and rebook him to all of their machines. He’ll have an ambulance ride to the airstrip, the flight over, and another ambulance ride to the hospital there.
I do get to fly with him – however I only get to take a small purse with me. Since I’m pumping – my pump and my wallet are pretty much my small purse.
Aaron is driving up to Philly with my car and all of my belongings, and Lasairiona is riding along to keep him company and make sure he stays awake. Averie will be staying home so she can continue to go to school, and either Grandma Janet or Nana will be staying with her.
After we get to Philly the team at CHOP will redo all of AJ’s tests themselves and reconfirm that he’s eligible for surgery. That could take another 1-2 days. Aaron will stay with me there until after his surgery and return home during recovery, leaving AJ and I in Philly for what they are estimating to be a 6 week recovery.
We are working on getting a space at the Ronald McDonald house in Philly, or a reduced rate hotel until we can get into there anyway.
We’ve had a number of questions about what people can do to help, and the big thing right now is simply praying! We don’t know a lot yet about what else we may need, we have someone lined up to take care of our yard, cats and kiddo… And thus far we have no idea what all we will need beyond that. If you want to contribute financially, there’s a link to do that – we are truly blown away by the support we’ve received there. That money will be used to cover medical and travel expenses. We have a friend who is graciously matching the funds we raise both on and offline as well! I don’t know how we can ever thank everyone who has contributed – no matter how big or small – it’s definitely making it easier to keep our minds at ease about the less important financial things that come along with the medical transports and months of recovery nearly 1000 miles away from home for all three surgeries.
So once again – thank you, thank you, thank you from the bottom of our hearts! Please keep the prayers and happy thoughts coming for a safe and stable transport tomorrow and a successful eval at CHOP that means we can proceed with surgery!