Still in Limbo

I took my son to his physical therapist (I really like her) and he was inconsolable again. We have been discharged from the hospital after 2 weeks. (do to the insurance) and he is so unhappy. The mass has still not gone down and he still is no longer himself. He is huge! I really think that it is do to his steroids. At least I hope so. I hope that the hemorrhaging blood will go down so that we can find where the AVM is and treat it. I really hate the waiting. We did a lot of that in the hospital. And I think that that is the hardest part. The doctors kept changing their minds between a AVM with a stroke and a tumor or so kind of disease. They did this for about 2 weeks before deciding on this one. However, with this his PCP has not seen a case like this in his 18 years of residence. And also the doctors as SPUH have not seen that many cases. I wonder if it is that rare. Hopefully the wait will be over soon.

i hope some decisions happen soon…the hardest part is the waiting game…stay strong and as hard as it is try to stay positive…i have both you and your beautiful son in my prayers…love and best wishes to you all xxx

I am so sorry for all of your waiting and your sons suffering. I want you to know that I am praying for you little boy and for your family that you all have the strength and courage and love to help him through this. You are not alone as long as you are walking with God! :slight_smile:

Even though we have a lot of members from around the world, AVMs are listed are a rare disorder. Most PCPs have never dealt with one. My neurologist never did! I agree with you, the waiting is HORRIBLE! Poor Jayden…please give him a hug from his new extended family! :slight_smile: