First lets take a look at the history of KC....
He was diagnosed in 2002 with syncope after passing out twice and having a positive tilt table. He suffers with dizziness and being lightheaded (the room-is-spinning kind of feeling). He has seasonal allergies in which his allergist and ENT have told him that his sinuses are always draining. He generally gets headaches at the temple area when the weather changes. He has sleep apnea, is overweight, and only 30 years old.
Our medical mystery story begins here....
Thursday, July 8th, around 9pm. While watching TV in bed, KC is suddenly struck with a pain at the back of his head. It is very uncomfortable and is a constant pain.
Friday, July 9th. While at work, sitting at his desk working on his accounting stuff... KC experience weakness in his arms. He stops writing for a moment until the feeling goes away. He starts writing and after a few moments the weakness comes back. It is an off-again, on-again weakness. And only lasted that day.
Saturday, July 10th, around 2pm. Joey falls asleep on KC's shoulder, KC then takes Joey upstairs and puts him in his crib. KC then uses the bathroom and suddenly has weakness in his knees and needs help walking to our bedroom. When he walks it is like his knees are buckling underneath him.
Sunday, July 11th. I am not liking the way KC is walking, frankly I am worried about his health. He still has the pain in the back of his head. We decide to go to the little Emergency/ Urgent care center they have in Grayslake. There isn't much of a wait and we are seen just as soon as we sat down. They are surprised that we waited til Sunday to get him checked out and not sooner. They run a Cat Scan of the brain, and do some blood test. They think it could be Guillian Barre, but they want to be able to rule other things out such as a stroke or MS. They decide to send him to Lake Forest Hospital for further testing and observation.This was KC's first ambulance ride!
He is admitted to the critical care unit on Sunday. They monitor his heart, oxygen level, and blood pressure. In the next few days they do another CT scan (brain), 3 MRI s (brain, neck, and spine), blood test, and a lumbar puncture (spinal tap). The only thing they see on CT or MRI is a small white lesion, in the front of his brain, that may indicate migraines. They decide his diagnosis is GB based on the elevated protein levels in his spinal fluid. (NOTE: I am not convinced that this is what he has!!)
Thursday, July 15th, KC is started on a treatment that will help clean his immune system to fight GB. This treatment takes 3 bottles of immunoglobulin (IVIG) for 3 days. Saturday he is done with the treatment and on Sunday he is discharged from the hospital and sent to Vista West Rehab Center until he can walk unaided. I should mention that all this time he has that constant pain in the back of his head. Pain medicine takes it from a 4or 5 to a 2.
Monday, July 19th, KC starts his physical therapy. He starts out using a walker for support. Sometime that day his pain goes away. As quickly as it came, it quickly goes away. He is then walking with crutches and later that evening using only a cane. On Tuesday, when I see him next, he is walking as well as he did before all this started, only carrying a cane as a precaution. The rehab people or very impressed with how quickly he is progressing. And on Thursday he is discharged and ordered to do outpatient therapy. I was so very happy to have him back home.
Since his admittance o the hospital I have had tremendous help with taking care of Joey. As a wife you want to be with your husband and making sure he isn't bored and he is getting the best care possible. As a mom you want to be their for your baby. How can you be in two places at once? Upon going into the hospital, KC's mom looked after Joey and the dogs throughout the day, even stayed home from work! KC's mom and dad went out of town that following Saturday, so our friends Libby and Tim looked after the boys. On Monday the 19th, my mom flew in from Fresno, California to help out. I am so blessed to have wonderful family and friends who can help out when they can.
On Thursday, July 22nd, I was very glad to have KC back from hospital and rehab. For that was the night of my first Illinoisan Tornado Siren experience. We don't have a basement or any shelter available in our housing area. So when we heard the siren go off and the voice say "seek shelter now," We loaded up in the van and raced over to KC's parents house and sat in the basement for 30 minutes when all was clear.
Everything was going well when KC came home. KC brought work home to catch up on and stayed hard at work from the moment he came home until Sunday. Sunday we went to church, and everyone was impressed with how he was doing. I even pointed out the fact that he was walking normal!!
I guess I spoke too soon! Sunday afternoon his pain in the back of the head came back, although it wasn't constant like before. His weakness came quickly back in his arms and legs. This time he was having pain in his shoulders, left elbow, knees and left calf. By that evening he was walking with his knees buckling.
Here we go again!!!.....
Monday, July 26th, we decided to go the ER at Northwestern Memorial Hospital in Chicago. With KC's dad and aunt pestering us to go, and think that it was a bigger hospital and a research one to boot, it would be our best option. When we got there they did another CT scan of the brain and of the chest, and did an ultrasound on his legs to make sure that there were no blood clots. Once they determined that it wasn't a blood clot and that he was in no life threatening condition they sent us home with a referral to go to an outpatient neurologist. What got to me was that they didn't offer any assistance to get to our car. HELLO PEOPLE.... He can barely walk. Lets just say that we were not impressed.
Tuesday, July 27th. KC went to work in the morning. I had a set of old crutches and although they were to small for him, he used those to help support him walking. It was around lunch time that he decided to try Lake Forest Hospital again. I took him into the ER and they seemed to be genuinely concerned that he wasn't walking normal. They decided to do another MRI of the brain to be sure that the white lesion they saw a few weeks ago wasn't changing in size or number. They also ran another set of blood tests. They admitted him for monitoring. One of the things they tested in the blood work was ANA - antinuclear antibody - this test turned out to be abnormal whereas the test done two weeks prior was normal. This didn't have them concerned, it could turn abnormal or positive in anyone's blood work, especially if they have had a viral infection. The MRI had no changes to it. Frankly, I think they were baffeled by KC's condition and couldn't come up with any answers. However, it sounded like they didn't think it was GBS.
Thursday, July 29th. They decide to send him home with a walker and to follow up with his regular doctor, the neurologist, and physical therapy in the next couple of weeks.
I haven't mentioned that while KC has been in the hospital the doctors have tested the strength in his arms and legs while standing and sitting. They have been impressed by how strong he is and it makes them that more baffled by the way he walks. One of the Occupational Therapist that came by said it was as though the signal in his brain that tells his legs how to function was not working properly. Unfortunately, there is no indication on any test of such an abnormality.
We just want to know why this is going on, but it is so frustrating to not know. I have a feeling there is a connection with the pain in the back of his head to his weakness in his arms and legs. Hopefully in the months to come we will get some answers. All we need to do is to be patient, pray, take one day at a time, and laugh even when there is no reason to laugh.
Afterall, laughter is the best medicine!!! And God is in control, he will give us answers in His time.
