Well, it seems fitting that we have celebrated days 5 and the beginning of day 6 of National Eos Awareness Week in the hospital. It is a scheduled visit. Yesterday, Andrew had his 8th endoscopy, as well as his first ph probe, which is still in as I type this entry. Six of those 8 endoscopies have been done in the last year and a half. That means six trips to the hospital, six days of missed school, six days of anxiety (at least for Mommy, if not for Andrew), six times under anesthesia, six scopes being put down my baby's esophagus...none of this without risk, but all of this to find answers, put my child into remission and help him live a healthy more normal life.
As I sit here and watch him play the hospital video games with the probe in his nose, he seems so content. I know, that seems odd, doesn't it? I am so lucky, because my son is really such a trooper. I truly hate this disease, but when I look at Andrew, I am reminded that I have so much to be thankful for. He is such a brave, strong kid. He rarely complains, even though he has not had a single bite of food since January 2 of this year. He drinks eight of his Neocate Splash juice boxes each day and never complains. Even while on those, he regurgitates after drinking them more than I realized. With this probe, he has to push a button each time "junk comes up his throat" (when he regurgitates), which has been at least 30 times a day...I've lost count. But still, he never complains. He wakes up from a scope and is happy. He had to stay in a hospital bed all day with a computer attached to him because of the probe, but he didn't complain. His IV hurt, he told me, I told him it had to be there and would feel better when he was sleeping and he went to sleep. Some children may not be so calm and cooperative.
So if we have to fight this disease, I'm glad I have Andrew to show me how to be brave and patient. He is an amazing child that has to deal with more than a child (or an adult for that matter) should, but he does so with such grace and courage. I learn so much from him. Andrew, you and Madison are my heroes, and I love you dearly!
Andrew is quite the trooper!!! My family and I haven't been dealing with EE as long as your family has, but so far Parker has been quite the trooper himself! Of course, he's not at an age where he can really complain to us, but he is generally a very happy kid and doesn't really show any signs of being in discomfort or pain.
ReplyDeleteAnd doesn't it just always seem the case that kids do typically handle challenges better than adults anyway? I hear stories all of the time about kids asking why an adult is so worried or a kid telling an adult that it will all be okay.
While I don't wish EE on anyone, I do certainly think it helps that we found out so early that Parker has it. For one reason, to hopefully tackle it before we get to out of control. But also because to him, living with EE with be 'normal' and not a challenge. I know he'll still have situations like hanging out with friends and such that will be difficult, but overall...
Anyway, thank you for posting a comment to my blog and giving me such valuable info. We are scheduled to go to Cincinnati Children's Hospital at the end of July for a week long eval. The visit includes a scope, allergy testing, consultation with a nutritionist, a social services visit, and more. So wish us luck! And good luck with your current treatment plan... I'll be sure to follow up with you!
Thanks,
Erin
Thank you for your comment. I'm glad that you were able to get an appoinment at Cinci. I agree with you that the earlier the child is diagnosed and started on a treatment plan, the easier (if any of this is easy) it is on them. I hope all goes well with Parker until his appointment. Please keep me posted afterwards and on his progress.
ReplyDeleteBest of luck!
Ginny