I guess I never made it back for continuing with my last blog...our week got all switched around.
Robert left Sunday morning for Canada, I took Zachary to the doctor again on Sunday morning because on Saturday we noticed that he was walking with his head tilted to his side/shoulder and still was saying his head hurt but not as bad. He had perked up mood wise here and there so I was having a hard time deciding what to do. One minute he would be acting bad and the next he would be ok. On Sunday my mom and the kids drove to Benton County TN because I have a paper due for my geography class and it requires some specific field work there. I figured since we would be in the car mostly that Zachary would be ok, PLUS overall he acted like he felt better so I honestly thought we were on the upswing but still having some odd "side effects". The final breaking point was after we stopped to eat lunch at McDonald's (I know seriously how bad is that but really he wasn't acting THAT sick, plus I am really glad we did or I may not have taken him in). So at McDonald's he was unable to climb up in to the play area. It was awful watching him, it was just heartbreaking because he would get one leg on the platform and half his body but was just almost "frozen" laying flat across the platform half way up and could not get up, couldn't even lift his head up off it. I was almost in tears watching him we didn't stay long and back in the car he was acting like his normal self but when we got out again he wasn't as perky. After some discussion I decided that I was tired of worrying and was just going to take him to Vanderbilt ER to ease my mind. I honestly thought they would do a few tests and send us on our way. We got there around 8:15 Sunday evening, just Zachary and I, my mom was with Jakeb and Zachary. They got us checked in and into a room relatively quickly probably by 9pm. The first doctor we saw suggested it being tortecollis and gave him a dose of Motrin and I think was leaning towards sending him home, I told him I didn't drive all the way up here for that and that I don't want to be overreacting but I also don't want to underreact. They had a hard time seeing exactly what I was talking about, it took a little more observation to see. Another doctor came in and checked him over and said they would be doing a CT scan and pottentially a MRI. He did great in the CT scan, and it came back clear which I expected but CT's don't always show everything so they ordered an MRI. Talk about nerve wracking! He had to be sedated for the MRI and from when they took him back to when they brought him back was 2 1/2 hours, there are several side effects they warned me about with the paricular sedation they used so I was going nuts! We sat in the ER ALL night long. The MRI showed inflammation of his spinal cord which was causing the head/neck pain and the tilting of his head. They ordered a spinal tap, gave him a sedative and a numbing cream and he did great with it, didn't even flinch! The spinal fluid was sent off for all sorts of tests, bacterial and viral and a few others. The tests all have come back clear which is great news! He's been here since Sunday night and is supposed to go home tomorrow. There have been lots of doctors in and out. The neurologists we have seen have diagnosed him with Acute Idiopathic Transverse Myelitis, which is essentially inflammation of the spinal cord from unknown reasons. It was most likely caused by a virus/cold that he had last week and for some reason his immune system in a sense turned on his body and began attacking his spinal cord. I have more questions for the neurologists about it and hopefully will understand a little more after talking to them. We have seen infectious disease doctors and physical therapists and occupational therapists, it's been busy. He's doing MUCH better, poor kid has been thru a lot. They started 2 IV's in ER and stuck him 3 times (1 mess up and 2IV's) They switched to one IV because they other was hurting him, well Tuesday he FINALLY wanted to get up so I picked him up and his IV came disconnected from one of the ports and his blood started running back up the tube which freaked him out, but then they couldn't flush it so they had to start another one. So needless to say he's been afraid to even move. He was real wobbly on his legs at first but is walking around much better slow but better. His neck seems better and he's holding his head ok, the big issue we are having right now that seems will require some therapy is with his left arm(and maybe right we aren't sure because of the IV he won't use it at all) he can't lift it up much higher than chest level, it doesn't hurt him to do he just can't do it. With help he can get it up there but has very little control once it's up. As far as other areas we will have to wait and see once he gets home. The damage to his spinal cord is worse than his symptoms are so there has been some concern that he could get worse before he got/gets better but so far so good. If you google what he has there is quite a bit of info on it but at the same time it's not really very detailed as to how or why it happens. Since all of his cultures have been negative they don't have many answers for us. It's rare and more rare for children. It's going to be a wait and see thing which stinks. Info I have read states there has been a correlation with AITM and later a diagnosis of MS but that is usually when there is more than one occurence of this. I feel like now we are going to walk around worrying which I of course hate! But right now he's getting better and will be home and we can start working on getting him back aclamated to everything again...moving around his arms and everything in general. There is also a chance he won't recover 100% of his strength and ability that he had before which is scary but again only time will tell, UGH!
Ok I keep getting distracted with him and the phone and etc etc so I am going to wrap it up...I will try to post some more details and what not later...really I think I have covered everything. He should be home tomorrow and on the road to recovery. It's been a LONG week!
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