Hello all! Julia is now past one month post op. She has had more good days then bad, thank God! Still dealing with the effects from the steriods. Her face is puffy and she has been eating non stop! She went back to school after 3 weeks and actually just went to a karate class on Friday. Getting her as active as she was is a priority to me because the mose she sits still the more she thinks about what happened so we are keeping her as busy as she can tolerate. The pain from surgery has gotten much better. She takes maybe 1 tylenol a day and that is because she says she has neck stiffness. I believe she is still scared the "pain" ( the chiari headache pain) will come back. Im scared too! Whenever she talks to someone about it I listen to what she is saying so I can see if anything is still there. A 10 year old is pretty tough to get the truht out of sometimes. She is still irritable but that can just be the fact that she is a girl. She has stopped getting up through out the night. The first week home she would not sleep more than a few hours at a time. I can see glimpses of our Julia trying to come through but I will admit this has changed her. I know all of this happened so quickly for us and I know it is only 1 month but I wonder if her spirit wasnt changed forever. For all of you parents out there, it is the hardest thing I have ever gone through in my life. The entire process has aged my husband and I 10 years. To decide to schedule our daughter for brain surgery, I still cant believe it. I hope that Chiari will be researched more and there will be a standard practice for medical providers. It hard to even schedule an appointment for a pediatrric neurosurgeon then be told "this is your decision, her surgery is NOT medically necessary"-still gives me goosebumps. So for now we have a success story. One month post op and doing well! Please know it means the world to me to have so many people really understand what it is like. I wish I never heard of Chiari but now that we have I am so thankful to have all of you!
OMG you are describing EXACTLY how I feel. Alexa is not the same kid she was before surgery and I too wonder if she’ll ever be. Her surgery was medically necessary because of her syrinx however all her post op complications have changed us. She is also irritable. This truly changes your life and the worry never goes away. We need to chat. I am from NJ too and it’s sooo hard to deal with this. I am here for you and I know what you’re going through.
Love JoAnne. PS. Why is Julia on steroids?
Julia was on steriods after the surgery. She was on them for 10 days. THe steriods reduce inflammation. From all Ive heard they are necessary but hard on the kids. I just emailed you! xoxooxo