So we have had a few people ask for updates from yesterday. It’s tough. It’s emotionally draining. I needed a day to think through it all, discuss it and then find a way to explain it.
We left with another new diagnosis and no new treatment options. For the second time in 8 weeks we have been told that there is no new treatment to try. We know her autonomic system doesn’t work and when it doesn’t organs don’t work correctly. The Dr reminded us that we can’t fix her autonomic system. So with that, I get frustrated and it’s like getting the diagnosis all over again. We have been going down this road since birth and we aren’t making any progress. We gained an overarching diagnosis which I thought was great but now I feel like it’s used as a reason for all her different issues.
I expressed yesterday that I feel that way (that we have made no progress) only changed one issue for another. The Dr looked upset by me saying that but Randy, addyson and I truly feel that way. It’s a tough balance because yes we slightly improved in one area but not without creating other issues.
I’m at the point of defeat, where I feel like we go to each appointment for no reason. We leave with no fixes for anything. we just keep hearing more and more issues. I just wish the Drs would tell addyson the truth ( we can’t do anymore and this is your new normal). They say it to us, but she thinks leaving with no new meds is a good appt but it’s not always. we leave with nothing because they have nothing else to offer. If they have nothing else, then let’s let her be a kid and go to school more and clinic less. I know we might need to sit and explain it to her but I feel like then we are taking away hope and hope helps us get by. But today I’m struggling with feeling like there is hope
Chop takes cases other hospitals can’t handle. So where do you go from there when they are telling you stable is a win. I hoped for stable to look better than it does.
Her Dr yesterday even said he hoped feeds could at some point be lessened but 2+ years in and he doesn’t see it happening anytime soon. He said she’s not even where he wanted her to be Weight wise.
We have gone round and round with some of her team. We have fought so tough. That while yesterday I left defeated annoyed and hopeless, we did have a win. He acknowledged that he agrees with another one of addyson diagnoses and he acknowledged how vital her feeds are. He said she’s a tough case. I truly believe he cares so much for his patients.
And none of this even covers her heart condition which freaks me out. The thought of your child possibly needing open heart surgery terrifies me. I know we have great Drs and surgeons but we are scared.
Tonight I’m all in my feelings… Tomorrow I’ll try to be stronger. Maybe I need another phone call with our Dr in ga. He reminds me that he’s trying…. He’s fighting so hard for kids like addyson. He cried on the phone w me two weeks ago. He cried over the thought of another surgery. He reminded me that we are great parents who have tried everything to help our daughter. We will be okay, we will adjust. I just wish she could be a kid without all this medical trauma.
Many of our medical friends are also struggling right now and I feel for all of them. Mommas I’m here for you. We are part of a tribe we didn’t want to be in, but we are a great tribe. Our families are strong.
I also want to say team impact has been amazing not only for addyson but for us. Her team reached out to see how her appt went. Addyson typical “good” But it wasn’t a good appt. I expressed to them where we are. The girls rallied around all of us to provide support. They are a sounding board for me when I say “this is how it really went”. They are already thinking of ways to help. I love this organization and the gw girls. They are family!!
Beaming with hope 