This morning was Kaleb's "Adenosine Challenge" which happened in the Hybrid Cath Lab at our children's hospital. Everything went really well, no hitches...perfect. He went right to sleep and only needed to be put to sleep with the mask because it was such a quick test.
Everything was perfect, even down to the fact that they have basically been able to rule out Wolff Parkinson White syndrome. It's not 100% but enough to proceed with further neuro testing and possible medications for seizures.
I'd like to think everything is perfect...but it's not. I'm so worn down and tired of it all. Trisomy is hard...it affects everything and changes your life completely. I'm sick of not having any answers and having doctors tell me they have absolutely no idea what is going on. I'm really sick of every test coming back negative. I hate giving doctors Kaleb's medical history and them asking "well what is his blood disorder called" and I really hate having to tell them, "I don't know because the doctors have never seen it before". I'm especially upset at doctors writing in their notes concerns for something and not talking to us about it (apparently TWO cardiologists wrote in their notes that they had concerns for WPW well over a year ago but never talked to us about this). I'm done telling people that I'm glad a test was negative, or that something wrong wasn't found.
If you want me to be honest, I wanted my son to have WPW and I don't really care if that upsets you or shocks people. I'm tired of not having answers. WPW is at least able to be completely fixed in a relatively easy way. The alternative for Kaleb...is not so easy. Seizures are difficult, you never know when they are going to hit..constantly on your toes. Often they start out as simple seizures and progress into worse ones over time. There is no cure for this, only medications. Which, for the medications to work, Kaleb's systems have to be in tip top shape...and lets be honest, they aren't.
I'm tired of hearing "it's going to be okay", "everything happens for a reason", etc. I'm tired of certain people in our lives not being there for us...or hell...not even calling us after something big happens to Kaleb to check on him. I am so tired of it. I'm sick of endless medical bills, doctors appointments, hospitalizations, therapies, etc etc etc. Please don't think if you have said the above things to us that we specifically are upset with you, we aren't, I mean honestly...what else do you say to someone in this situation? "Sucks to be you!"??
Please, go ahead and judge me, try to tell me what I'm doing is wrong and I need to do something different, be my guest, but please know that does not help our situation or Kaleb at all.
I am mad, angry, frustrated, sad, and pissed off FOR my son. He deserves the best...the best medical care, the best people in his life, the best answers, the best everything and when he doesn't get that...I'm not happy. Of course I'm not going to give up on finding answers, but seriously...put yourself in my shoes, or my husband's shoes. It's not easy...
We just want answers and for our boy to be okay.
We may have a lot of "wants" but please know that we are entirely aware of the wonderful things we have. We have a happy family with lots of laughs and fun times. We are a very close family, the 4 of us. We are happy every single day and thankful for all of the wonderful things in our life. So please don't think I'm being ungrateful. I just don't want my son to have to continue to go through difficult and risky testing to get another negative or "normal" result. At what point do you stop and say enough is enough? ::big sigh::
And with that I put on my happy face and continue through my day as if everything is perfect. This year I will focus on being a better person, not letting people or circumstances (whom we cannot control) bother me so much, and be grateful for the friends and family that I do have in my life.