Diagnosis

(To read the story from the beginning, see the first blog and then read up)

Thursday morning. We got up, and got ready to go. We had no idea what to expect. Would Joey have to stay in the hospital? I packed some jammies and his "doggie" to comfort him, as well as a change of clothes for us...just in case.

We arrived at Children's Hospital and filled out forms, gave insurance info, etc. In the waiting room, to ease my nervousness, I started reading the book of Psalms in my bible, trying to find one that comforted me. I stumbled over Psalm 139, and as I read it, I began to put Joey's name into it. It read like this:

"For You formed Joey's inward parts. You covered him in my womb. I will praise You, for Joey is fearfully and wonderfully made. Marvelous are Your works, And that my soul knows very well. Joey's frame was not hidden from You when he was made in secret, and skillfully wrought in the lowest parts of the earth. Your eyes saw Joey's substance being yet unformed. And in your book, they were all written, the days fashioned for Joey, when as yet there were none of them. How precious also are your thoughts to Joey, O God. How great is the sum of them. If I should count them they would be more in number than the sand".

Even though that psalm didn't ask anything of God, it acknowledged that Joey was in His hands, which did make me feel better.

A nurse called Joey's name and and walked us into a room, where they gave him drops to dilate his eyes. After a while, the doctor and his partner Nancy, walked in. The doctor looked into Joey's eyes. He wrote some notes and sat to talk with us. "It just doesn't look like retinoblastoma." He said. He went on to explain that "retinoblastoma" is his specialty and that he can usually be 90% sure whether it is or it isn't, just by looking in dilated eyes. "However", he said, "It does warrent putting him under anesthesia for an exam to rule it out and to see what it is". His guess was Coats' Disease, for which he would send us to another specialist. They were so encouraging to us. I recall that they told us "Whatever this is, it is nothing that will take his life, and probably not even his eye, so please don't worry about that." They told us not to scare ourselves by going on the internet. "Too late", we told them.

The "surgery" was scheduled for the following Monday at 1:30. We were to arrive by 11:30. We got to L.A. a little early and so we just drove around Hollywood to kill time. My stomach was churning. Finally we pulled into the hospital. We checked in at the main office. Then checked in at "Surgery Admit" They weighed him, took his vitals and gave him some little purple hospital pajamas, and sent us tho the surgery waiting room. The room was full of kids in little purple pajamas, and there were lots of toys. We waited two hours before they finally called us up. I told Joey that they would give him some medicine to make him sleepy, and that when he woke up, we'd be right there. We were told that one of us could go in the OR with him and hold him as they put him under anesthesia. I put on the white overalls, head covering and shoe covering. They wheeled in a little bed and Joey immediately grabbed onto me and said "I dont want that". So I just held him and walked with him instead. I sat him on my lap and they placed a warm blanket on us. When the anesthesiologist came in, they put the mask on Joey. I kept talking to him, telling him I was right there with him. When he was out, they escorted me back to the waiting room.

About 45 minutes later, the doctor walked into the room. He said "Just as I thought...its not retinoblastoma.". He showed us the photos of the eye, and said it was Coats' Disease. He said referred us to another specialist who would be the doctor that would be seeing Joey from this point on.

We were called into the recovery room, where Joey was waking up. He had an IV in his hand and he was very groggy. The more he woke up, the more combative he got. He kept swiping at his IV. The nurse wanted to leave it in, in case he got nauseated, they could give him something through the IV to help him. Finally, they took the needle out and he seemed to be a little less agitated. The nurse said that we were ok to go home, but that we could hang out if we wanted to. Finally, we decided to go. We stopped at the Mcdonalds in the hospital (yes, they actually have one IN the hospital) and got some fries and diet cokes. We started the drive home (LA freeway at 5pm on a Monday....not fun). We arrived at my mom's house and layed him on the couch. All the lights were off, and the TV was on, and he kept crying that it was "too bright". After a while, he got up and started playing. He was good as new.

The next day, we called the new specialist, Dr. T, and made an appointment to begin treatment for Coats' Disease.