Thank you to everyone who has been asking about and praying for my brother and my family. It's been rough, but we're praying hard and keeping positive. I can't believe it's been almost a month since this whole nightmare started! I've been busy with so much, but I finally have a little time to blog and update about everything:
First of all, as the blog title states, it has a name. My brother's diagnosis is
Transverse Myelitis. It's a neurological disorder where the spinal cord becomes inflamed, and these attacks of inflammation can damage or destroy myelin, the fatty insulating substance that covers nerve cell fibers. This damage causes nervous system scars that interrupt communications between the nerves in the spinal cord and the rest of the body. So basically, my brother's spinal cord has lots of swelling that prevents his nerves to communicate properly with his body, which causes him to lose feeling and control of his body. The start site of his paralysis is at T6 of his vertebrae, and everything from his chest downwards is completely paralyzed.
Upon finding out about this, most people ask, "Why?? How??" Well, unfortunately, we don't know and the doctors don't know either. The cause of transverse myelitis is still unknown and there hasn't been enough research on it. My brother's doctors say it's auto-immune, which means the body has incorrectly turned on itself, and is attacking itself. To try and target the "bad" cells, my brother went through treatments of
plasmapheresis where his blood would be removed and the plasma was taken out and replaced with clean plasma. These treatments ended almost 2 weeks ago, and we are still waiting to see any change from those treatments. He is still taking major steroids to help with the swelling, but basically, it seems that all we can do is sit and wait. Most cases of transverse myelitis lead to some form of permanent paralysis, however, there are about 30% of cases where the patient can get better in time. The other 70%, unfortunately must just learn to live with their situation due to the damage within their bodies.
Anyways, in the past month, my brother has gone from the ER and ICU at Lakewood Regional Medical Center, to the ICU, then the Neuro floor at LB Memorial Medical Center, and now, he is at the Rehabilitation Center at LB Memorial. He's been through dozens of MRIs, spinal taps, and blood tests, as well as poked at and examined every day. Most recently at the rehab facility, he's been given a wheelchair and is being taught how to live daily life with his new found disability. He's building up what he has of his upper body and learning how to move around in his wheelchair and take care of his personal needs.
I ask him every day how he's doing, and although he says he's okay, I know that inside it's hard. I mean, how could it not be?? He went from living an busy, active life full of friends and school (as most 22 year olds do), to being confined to a hospital bed or a wheelchair and depending on others in order to take care of basic needs. I know it's hard for him, especially since he's like my dad-- very independent and wanting to take care of everything by himself. Even has a little kid, he was the one who didn't want help assembling his toys or games-- he'd figure it out on his own, even if it meant that he'd end out breaking whatever it was. And now, his days are full of physical therapy and occupational therapy. Sitting up in his chair is a struggle (because he has no control of his core muscles). His legs are SUPER skinny due to his muscle tone going away. But despite all that, he still manages to smile. He tries his best every day and is doing so well.
I'm so proud of him. As easy as it could be to let everything make him angry or depressed, he keeps looking forward and staying positive. If I was in his position, I know that I would let my frustrations eat me up and get me down; but not my brother. So many times I've cried over this and everything going on, saying that I wish my dad was here, because he might know what to do. But just seeing how my brother is and how he's coping with everything.....maybe my dad is here and has been here all along.
Sorry, I know I've rambled on, and not necessarily in any organized, easy to understand direction either. Sorry for that too. I hope this explains and updates you on my family and my brother.
Anyways, we visit him as much as we can, which is every other day during the week and usually on the weekends. It's become a sort of meeting place for my family. I think it's actually brought us closer together, which has been an unexpected blessing. Here's a picture of a birthday we celebrated in my brother's hospital room:
Again, thank you for your care, concern, positive thoughts and prayers. We very much appreciate your love and support!!!
