This will not be my typical post. My ability to be tactful and “glass half full” has been replaced with desperation. This will be an influx of information and prayer requests.
This past Wednesday, C and I were able to meet with Doctor Lotze(Neurologist) and Doctor Schwabe(PMR). I went armed with pages of questions; both doctors were patient and kind.
Main Points of the Visits:
-There is a Transverse Myelitis Clinic in Maryland at the John Hopkins Hospital. I wanted to know if Doc. Lotze felt if it would be beneficial for us to travel there and receive a consult from them. The first thing he said when he walked in was that John Hopkins would be here November 2nd and he wanted them to meet C…what did I think??? I said YES!!! I showed him where I had written that very question; he said GREAT, free consult in your own backyard! PTL!
-The Overall Health Concerns for Christian:
*Permanent Paralysis from waist down
*Limited use of his Hands
*Kidney Complications: due to the fact that it is hard for C to urinate, he is at high risk of kidney infections, kidney damage, and kidney failure. We are adding a Urologists to his team of doctors.
*Pneumonia and Aspiration: due to his weakened respiratory system C cannot properly cough, sneeze, or swallow thin fluids (ie water or juice but milk is fine). We are adding a Pulmonologist to his team of doctors.
-The MRI and some of Christian’s symptoms don’t add up. Some of his symptoms say the brain is involved but his scans show a healthy brain. Thus begins the waiting and watching. There is evidence (C’s recent flare up and “brain” symptoms) that C has Multiple Sclerosis on top of his TM. Only time will tell.
-As it was explained to me the atrophy of the spinal cord is discouraging; however, Doc. Lotze is still hopeful C can regain use of his legs. The first six months is critical in recovery and we will see the most changes in this time frame. Still, we can expect subtle changes for up to two years. He told me after we hit the six month mark if C’s legs were still not working, then he would probably never recover the use of his legs.
-We got the news that the channels I was pursuing to get Christian on Medicaid were probably not going to work out. This is devastating. Our insurance is awful, to say the least. They barely cover anything and on top of that Christian is maxed out on his benefits…leaving us with NO medical coverage for the next 6 month. Having Christian’s diagnosis and health concerns is intimidating but knowing I don’t have the resources to get him the therapy, equipment, and specialist he needs is devastating. I am his mother…it is my job to take care of him. I need GOD to do one of two things either heal Christian completely so Medicaid is not needed or provide us with Medicaid.
Please be in prayer for the above information.