Chaos

Thursday morning I awoke to a fairly busy day, which was good, because I knew it would keep my mind off of the events to come. My mother was having outpatient surgery to have her gallbladder removed, and Baby had her brain and lumbar MRI coming up on Friday. Little did I know, however, that these "events" were just the tip of the ice berg.

By 2 o'clock I began to worry because I had no heard from my dad, and I had a feeling something was wrong. At that very moment, my sister called to tell me that Momma was out of surgery and doing fine. For some reason, though, I could not shake the worry away. A little later, I received a call that my mom was in ICU and needed blood.

After many calls and a bad nights sleep, Evander and I arose at 4:00 am to get ready for another arduous day. We had to have Baby at Cook Children's Hospital by 6:00, which meant we had to leave the house by 4:45. We scurried around the house stuffing backpacks full of crayons, books, snacks, and toys. We made lunches and hurriedly packed the car. The kids were whisked from their warm, cozy beds and thrown in the chilly car, and we were on our way.

Baby had her blood pressure and temperature taken, had a vitamin taped to her butt (to mark the spot of her dimple), her head measured, and changed into a baby hospital gown. She hadn't eaten since the night before, but she never complained. When it was time for her to be sedated the anesthesiologist and nurse laid her own the bed and placed a mask over her mouth. Baby just laid peacefully, holding onto her Lambie with one hand and my fingers with the other. She was so calm and peaceful, while I was fighting back tears. I was thankful to be there to assure her safety and comfort, but I was also terrified and extremely uncomfortable at the same time. As she began to drift off, the Dr. warned me that she might look funny and she did. Her breathing became rapid and her chest began to quiver. Her eyes were rolling around in her head. I tried not to look horrified as she tried to keep her stare on me. Soon it was over, and she was asleep.

What seemed like hours went by, until I was called to come back and see her. When I rounded the corner I heard her screaming "Mommy". It was not a sad scream or a scared scream, but the scream of a pissed off little girl. It was a scream that said "Where the hell have you been and what did they do to me?" I picked her up as she fought, kicking, hitting, and crying. She was demanding that her IV be removed but that could not happen until she had something to drink. Eventually the IV was removed and the kind nurse taped little cotton balls to her hands. This ever so angry Baby quickly tore them off and threw the wads of tape to the floor, followed by her sippy cup, Popsicle, and bottle.

Once she had calmed down and changed clothes, we were off to the neurosurgeon's office. I was hoping for good news but feeling like we might not receive it. He began with the brain. The MRI showed large ventricles (which is why we were there), and the large ventricles appeared to be the same size as they were in the head CT, which is good. The problem is that, since we do not know what they were like before the head CT, he does not know if they are growing or just large. Because of this, he will continue to monitor them to see if they get larger from this point.

Now to the back, or sacral dimple. Everyone has a portion of the spine called the phylum, which is the "end" of the spine. A "normal" phylum is very thin and allows the spinal cord to extend beyond it and onto the remainder of the back. Baby's phylum is fatty and larger (I have decided that everything about her is just bigger) than average. This indicates a tethered, or tangled, spinal cord and will need to be repaired through surgery. If it is not repaired, as Baby grows, the spinal cord could tighten and she could lose "ability" in her legs and bladder (permanently).

With that lovely information in tow, Evander and I packed up our stuff and our children and headed out to the car to receive another update on my mom.

On the way home we discussed when Baby should have surgery and if I should go home to help my momma. We were interchanging topics as if we were discussing what to have for dinner.

I said, "She sounds like she is doing good, so maybe I shouldn't go home. What do you think?"

"I think we should have the surgery after the holidays," remarked Evander.

"I agree. I don't want her in pain during Christmas. That wouldn't be fair. Maybe I should go home."

"That's up to you!"

We went on like this all afternoon until we received a call from the neurosurgeon. Evidently, when he gave us the news, he had not received the "official report" from the radiologist. The radiologist disagrees with the neurosurgeon. He does not believe that the phylum is very fatty, but our neurosurgeon is sticking to his guns. Where does this leave Baby? We are to watch her for signs of trouble (leg or back pain, loss of bladder control, loss of leg ability, ankle turning or more severe pigeon-toes), while we are also watching for signs of possible hydrocephalus (sleepiness, head growth, vomiting, "out of it", trouble walking). He wants to follow-up in 6 months.

Evander and I were, first excited and then angry with the new information. Did someone make a mistake? Who should we believe? Where do we go from here?

I'll tell you where I went. On Saturday morning I got a call from my mom asking me to come home (in not so many words). I ran home and booked the next flight out, which was 1 1/2 hours from then. I threw some things in a bag and headed to the airport. When I arrived at the hospital, I knew my mom wasn't doing well. Long story short, she required 2 units of blood and had fluid in her lungs. She was unable to breathe without oxygen and could not eat. I stayed with her until Sunday night, when my aunt came in to take my place.

Early Monday morning, I flew out, and Evander and the kids picked me up at the airport. We were headed to Austin to see our DAN! doctor. They were very impressed and excited with Bubba's progress and gave us more to think about. The doctor really wants to chelate, which is metal detoxification, but I have my reservations. Evander and I will have to do lots more research before we agree to this treatment.

I know this post is kindof all over the place, but so much has gone on in the last few days. My mother is doing well at home now, and Bubba is back at school. He did not qualify for his physical therapy eval on Tuesday, but I think that is good news. He is doing well at feeding therapy, too. Baby is just now getting back into her groove, and Evander is back at work. There is always chaos, but it has never been like this!