Saturday, April 05, 2008

one step forward, two steps back

orion's seizures continue. he had a complex partial seizure, where his eyes are pretty dazed and lost, fixated onto one spot, and doesn't have much of a response to anything. it's been a very hard day for us here, especially after all the progress orion's made over the past two days.

it's already hard enough to be in the hospital, and it sucks even more when you're dealing with something that is based on theory and not having answers. our theme lately has been "neurologists are idiots." maybe we need to make shirts, haha. but, we are not totally serious on that thought. i think we are more frustrated because they can't give us any answers, and they only way to help orion right now is with medication. the only way to get rid of clotting in his brain is to give him an anti-coagulant, which would most likely be coumadin (that's what bo takes). but since he is post-op, he can't take that since it would cause too much bleeding. so orion is only on his usual aspirin, and this really isn't solving anything at all. they are working on controlling the symptoms by giving him anti-seizure meds, but it is too soon to treat the clots.

that said, you can imagine how tough it is to be here. cardiac-wise, he is doing amazingly great. if there were no neuro issues, we'd probably be home by now. it's so scary to think that there could be damage to his brain, but we try (really really hard) to think optimistically and have hope that he will develop around it and adapt.

at least he got one chest tube out today! that is another step closer to recovery. hopefully we can get the next tube out and orion will be so much more comfortable and will allow for him to move and start strengthening again.

he is sleeping right now, a very much needed nap after a long day of drugs, examining, and poking. he is getting another 24-hour EEG, and i can't stand sitting here watching the monitor. i really wish i could read these and figure out what's going on with orion's brain.

i apologize if this post is so disorganized. thoughts are everywhere right now, and today was a very emotional day. i'd say it's probably the hardest time of my life, and i haven't had much sleep. along with these events and rollercoasters, bo's best friend's dad passed away this morning. he was battling cancer for quite some time, and we are both very saddened. our thoughts and prayers are with his family. boy, today was an insane day.

other than orion's seizures, things are still pretty much the same. he loves his milk, he didn't start any finger foods today. he spent most of the day sleeping due to the medications he's on. he was more awake and alert tonight and played some with dad, and grandma came today! he still hasn't smiled yet, but he is crying more (with his very scratchy throat) and whining, which is a good sign of response. we miss him TERRIBLY. i spend most of my days looking back at old pictures, and in the back of my mind, i wonder if he will ever be that same happy, smiley boy. i know i should think positively and know he will be okay, but at the same time, it's always a possibility there can be brain damage that can affect his future. my heart breaks when i see his lost eyes, and it's very hard for me to sit in the room with him. i spent most of my day crying on the phone with friends and family and wondering why this was happening to our son, the happiest kid in the world. being here has made him so sad and i haven't seen his sweet spirit in a long time, it seems like forever since i've sensed happiness from him.

this is the hardest hospital stay i've ever experienced. it's "easier" to deal with physical issues because they have a very rigid, to-the-point, by-the-book fix for it. broken heart? easy. thrush? easy. well, broken heart isn't that easy, but you know what i mean. how do you handle neuro issues? bo and i can't stand this questionable state, it is so frustrating to talk with doctors and to figure out how to help orion. it's all a guessing game. and it sucks.

BUT, we do have to keep our spirits high and show orion he has strong parents. it's so easy for him to sense our stress and fear, so we both do our best to be strong for him. we just love him so much and can't wait to bring him home.


Anonymous said...

I wish I had words that could lend some comfort to you right now, just know that you are all in my thoughts daily. Trisha

christine Adolph said...

Hang in there and try with all your might to not let yourself go down the "what if" road...stay strong. Christine

Terri@SteelMagnolia said...

Awww... my heart breaks for you all...

keeping you in my prayers and thoughts...

I'm going to be out of town for a while.. but I will check on you guys next Thursday.

Little Baby Manning said...

oh you guys *big sigh*... i just can't help but cry for you because although we did not experience this same thing, it brings back so many extremely painful moments and insecurities. i am SO sorry you and your little boy are going through this. please don't give up on being strong and remember that miracles happen everyday. your positive attitude (even if you have to talk yourself into it right now) will help Orion so much - i can tell you guys are trying so hard and doing the best you can. you really are amazing parents. be strong and we will pray for you. we love you guys - the mannings