first off here is addysons xray from today. Now there was an adventure to get to the actual xray step but that is nothing to be surprised about because simple tasks with miss Addyson always have a twist 😂💖
I made an appointment for her x-ray and even called to ensure they had received her script. Yet we get there and the script is missing. The front desk coordinator tries to call Hopkins, can’t get through so he gives up. I said no we are getting the x-ray sometime tonight. So i call the on call doctor. They didn’t feel comfortable giving the verbal OK so they page her surgeon. We are now advised to sit and wait. During this I call hubby who emails the NP. We again are at a stand still, waiting for a reply. In the meantime I call a great friend who I hope has the number…she didn’t, but she immediately said what is wrong. She knows that voice! We hang up (I’ll call you back , promise). We finally get ahold of np and surgeon at the same time. Both who give the verbal okay for the x-ray. In between all this addyson pooped 😱. We get the x-ray any way. It has been sent to her care team
We get home eat dinner and go to do her flush and nebulizer (because her asthma is flaring) and somehow her extension because disconnected and her stool is leaking all over the bathroom from her extension. We cleaned her up, fixed her flush and continued the evening routine. Now we wait for advice from her team.
A few people stopped me today and said how good she was waiting over an hour for the script issue to be fixed. Her answer was we wait a lot for x-rays at Hopkins but there I get my favorite technique (I tried to let her know its technician but She doesn’t believe me). 😂
At the end of the day my strength comes from these kids and their journey
Beaming with hope 