So yesterday Juan and I drove Jana 2 hours to take her to the Rady Children’s Hospital ER. All last week she had been sick and was already on an antibiotic. Se had seemed to be getting better. However, from Thanksgiving on, she seemed to be worse. Just not feeling herself, coughing a lot and then we noticed her skin tone was off. With her heart problems, she has always had some circulation issues. Usually it goes right away, however she just didn’t have good color or circulation. We decided to just take her in. Luckily, there was nothing wrong! The doctors felt that this is all from her upper respiratory infection. It has been the first time we’ve made the trip for basically no reason. Which to me, is pretty awesome! I am planning on contacting her cardiologist to see if we can bump her apt up from February. That’s a little tough though cause they are very busy.
Before we took off we had to stop for gas. I laughed to myself because from the gas station, I could see our local hospital. We were one block away, but taking a 112 mile trip instead. Do we have the best medical care where we live, no. But that honestly isn’t the reason. Jana is not a typical child. She has other health issues that Down Syndrome has caused. So far we haven’t had very much luck locally when she has needed emergency care. We trust Rady’s. They have access to all her specialist, all her testing, and a better understanding of her health concerns.
When we met with the doctor, we went through Jana’s history with her. We explained our concerns, what we’ve been doing about them and what we thought was wrong. She told us we seemed to really be on it and educated about her health. Part of me felt like saying, “We have to!” Never with the big kids did I feel like we had to fight to make sure they got the help they needed. We basically have to know what Jana’s conditions are, what medical treatments help, and why she is having issues. Honestly, there have been times where we feel somewhat more educated than the people who are there to help her. But this is our job! Our job as her parents to make sure she gets the care she needs! We are the ones who have to petition for her therapies, apts, and services. Our job as DS parents is to connect with other parents, to ask questions, to read and research, to allow others to help and be involved in raising Jana.
But you know what…all of it is worth it! The arguing with providers, the traveling, stress, worries, the waiting, it is all worth it to make sure Jana is the best she can possibly be. I would move the world for this girl! She makes our lives not only a little more interesting, but also full of love and smiles. She is So Totally Worth It!