I don't have answers for neuro. Only more questions. I almost don't even want to post about it-- I really haven't talked about it much. It was a very confusing, misleading, frustrating appointment. I do not like the doctor we got. He's every mom's nightmare-- every word I said was wrong, or I felt like he thought I was lying a few times... I don't want to assume that's what he thought, but that was my impression. He kept saying things like, "well, obviously he's not paralyzed," and I just wanted to whack him upside the head and shake him. I KNOW he's not paralyzed, or retarded, or Autistic, or having seizures... can you tell me what IS going on? Because what I know, adds up to not much.
They did a LOT of blood work, and we go back on Thursday to have an EEG done, which checks for seizure activity (he's never had a seizure, FYI). Thank God for good insurance I guess, because this isn't coming out of our pockets, and we're even lucky enough that we'll be reimbursed for travel expenses at some point.
I'm taking him back to the pediatrician on Friday, to get a copy of his MRI report that was done this past Wednesday, and start a new referral process to get a second opinion for his neurology. I'm not going to let this be the end, I feel I'm getting the brush off from his doctor and I'm NOT okay with it.
As for his cardiac team, we're still having a great experience with them. I have zero complaints, except that we have to see them in the first place, frankly that part blows. His cardiologist carves out as much time for me as I ever might need, answers all my questions, no matter how irrelevant or silly I know they are, and always reassures me that he's invested in this case to the end. Have I mentioned lately I adore his cardiac team? Because, really. We're having polar opposite experiences at Duke (good) vs. UNC (not so good).
Anyway, the only update I have for cardio is that surgery is a go. His blood pressure continues to be too high, and factoring in the hypertrophy (muscle hardening) of his heart that has already formed, there is no reason to wait until he's older to do the surgery. I guess there is some flex time that can happen, meaning it's not an emergency right now, but there's a "line" into BAD territory that no one wants to cross-- risking heart failure, heart attacks, and all kinds of other bad business I'd love to avoid with my child. Anyway, we are scheduling his surgery this week. I'm glued to my phone, waiting for a call from the main hospital once they get the schedule of the doctor who'll be doing the surgery (the head of pediatric cardiology, by the way!). But it hasn't happened yet, so all I know is that it will be soonish.
As for Keagan himself, he seems fine. He's had a good run lately, with fewer bad days, and speech therapy seems to be going well. They're just starting with him, but I really like the game plan they have for him, and his EIC (early intervention) team is excellent and they care so much about us personally. He seems to be more tired and more snuggly lately-- that could be from his heart working too hard, or just a growth spurt, or just my baby knowing on some spiritual level that something major is changing in his life. Either way, I'm doing all that I can to hold him when he asks for it, and give him the endless supply of hugs and kisses he wants.
As for me personally, I have my moments of really losing my mind. The night before a procedure, no matter how simple, is the worst for me. I cry, I don't sleep, I worry, I try to pray, and I inevitably post some heartbreaking facebook status begging for prayer support. I have no words when I pray for Keagan. I just cry in my heart and I know that God knows what I am feeling. It's taking a new level to my faith, to have to surrender my son, who is my entire life, to God and hope for the best. My worst nightmare is losing him, even though I know beyond a shadow of a doubt that if he sees Jesus before I do, that we will be reunited again. It's still an impossible situation to keep a hold of your sanity, not knowing which side of Heaven your child will gain relief from his pain on. But I have so many people, joining with me, to bang on the gates of Heaven and BEG God for my son's life. I've only used that phrase to my mom, in a random crying fit in my driveway one day. And when we were in Wilmington a few weeks ago, a woman prayed the EXACT phrase of "banging on the gates of Heaven and begging for Keagan's life," so I KNOW that our prayers are being heard. I just know that Keagan IS being actively held in the arms of a loving God, who has amazing plans for him. I'm not confident of much in my life right now, there is a lot of fear and uncertainty, but I am confident that God knows better than me, that He has a plan for this situation, and that He has NOT abandoned me or Keagan as we walk through the valley of the shadow of death.
No comments:
Post a Comment