The wheels have fallen off this roller coaster ride I call life. Now to figure out how to put things back together. I blog from my ever so comfy couch bed in rm # 404 at CHOW. We came via chariot last night with a very sick little boy. As you all know from my blogs that Danny hasn't really had to best time this summer, it seems as the last rod lengthening was the point of no return for Danny. He just hasn't been the same :(. Well the last few weeks have been no exception to the rule, with new issues that all came tumbling down yesterday morning.
First, and most important with all this craziness Danny has remained comfortable which is so important. The issue is he's TOO comfy and that presents tons of problems. Now to figure out why/what's going on with him. This is what I do know as of right now.....
his poor body is shutting down!!! He has stopped peeing on his own the last few weeks and noW has stopped producing urine as of yesterday. His lack of BM's despite many attempts to get him to go is concerning but the KUB has shown NO perf or obstruction so that's encourging. He has severe pitting edema and is swollen everywhere, poor boy looks like a stay puff marshmallow. He's gained so much weight in a very short amount of time. The chest X-rays this am is showing fluid in the lungs now too, and I'm waiting on a game plan as to what they are going to try to get rid of this excess fluid. Danny won't wake up!! He is out no matter what we do to arouse it doesn't work. There are tons of theories right no as to what's going on, but nothing concrete so let the testing begin. His CRP ( inflammation marker) is high and his labs have shown a bacterial infection in the blood stream, BUT we caught it in time and it looks like Danny is NOT sepsis, phew! He is not tolerating his feedings, but if we run slowly he manages to most of his meds down. I believe tomorrow they are going to start TPN. There is bleeding coming from his rt Inner ear, trache, and this morning the Gtube. This afternoon they are going to be doing a bronche at the bedside. I believe they are ordering brain imaging, possible long term EEG, cardiac tests, thyroid tests, and many more that Im sure I am missing. Today n tomorrow will be more of dx day and I hope if we seek then we shall find. I will keep you posted as I know more.
And now onto me. Tuesday I had a follow up with my Neuro she confirmed that for the most part my brain imaging has remained stable. I still have my lesions but no new ones :). YAY!! It was nice that she was able to go through the parts of the brain that are injured and what it does as it reassured me that most of my issues are indeed MS related as to wherethe sores are located in the my brain. Most of them are located in both frontal lobes. The reason my right side is mostly effected is do to the location the lesion in my spinal cord is. I was also dx with fibromyalgia too, well isn't that special. NOT! Whatcha going to do - it is what it is, but come on ... Who the hell did I piss off? At least I have a reason as to why I hurt so much all the time. I'm looking into diffent therapies and meds to aid me in my independence for longer. Time will tell if things are working, but not gained if nothing tried....right?? I can wonder how well this medical stress with Danny is aggravating my symptoms. Just this morning my hands were weak and I dropped my pumpkin latte, grrrrr. Now that just not right.....it's Pumpkin!!
Dan and Avrianna have been bonding more lately and I have to say its SO nice to see. Those two are two peas in pod. They had a Daddy daughter weekend last week up north and had a blast. Dan has taught her how to ride the 4 wheeler and I guess she's become some what of a sharp shooter. He's teaching her how to shoot n hunter safety and she is a natural, go figure. I'm so happy she is excited about going up north now more often and spending more time with her dad. And I can bet Dan is loving it too :) They are planning on another trip this weekend. Which will be nice to get her mind off us being here at the hospital. Avrianna had a really rough time in the ER when we left. It was really the first time she saw transport come pick us up and it scared her. I felt just awful having to walk away from her as she was hugging me tight and crying. Nothing like tearing my heart out and stomping all over it. I can only imagine what goes through her mind and how it plays with her emotions. Poor bug :(