Do You Hear What I Hear?

First of all, I apologize for not getting any news onto the blog yesterday. The internet connection was not working at the hotel at all. I tried it up to the last minute before we left to come home. We really wanted to share our news with you!

Paul woke up on Wednesday in good spirits. I believe he was looking forward to hopefully getting someone's help with his headaches. He understood that the test was a way to start the process of finding some solutions. He was very alert and talkative before the spinal tap test. The doctor came and talked to us, explaining again what they hoped to find or rule out. He said that they were going to try to determine if there was the issue of low pressure, which would be caused possibly by a leak of brain fluid. He asked Paul a lot of questions and Paul understood them all and answered them. After that, they prepped Paul and were about to roll him away. I made the sign of the cross on is head and he took my hand, and looking right at me said, "please pray for me." After they rolled him away, Jon, Jerry and I prayed the Glorious mysteries of the rosary. About 1 1/2 hours later they brought him back. We thought he might be wiped out, but he was still very alert. I asked if it had hurt and he said "Yeah, it was really bad. They had to stick me almost 8 times before it worked." I was incredulous and said, "Oh no, how awful!" He laughed a little and said he had been kidding. It went just fine. He ate some food, and when the nurse asked him if he wanted something to drink, he asked what they had. She said it would be good for him to have something with caffeine so that the dye would be flushed out of his system more quickly. He asked her what she would drink in this situation and she said a diet Coke. He said, "Then I will have a Coke, but not diet." He has done that a couple of times, where he will ask the medical professional what they would do if they had to make the decision. Then he makes up his mind. I wonder if it is because he wants an opinion other than his mother's! He doesn't always believe me when I ask him to do something that will help him, like drink 8 cups of water a day, or take vitamins, or stay with healthy food. He has even said he thinks I just make things up just to get him to eat all that 'organic' stuff. (I knew I was going to have a tough ride when the feeding tube was taken out..............he still wants to eat fast food everyday!)

When the doctor came in, he said that the test showed there was a probable leak from a hole in the orbital at the inner corner of the left eye, about where Paul's eyebrow starts. It appears to be an intermitent leak. He said that the other area of concern, the break in the basal (spelling?) area (the base of the brain floor) was definitely healed and there was no leak seen. That was the best news, as that would have required a far more serious kind of brain surgery. He explained that he will have a plastic surgeon who has a lot of experience with reconstructive surgery, review the tests taken so far and they will schedule the needed surgery to repair the hole and do the reconstructive surgery of the orbit (which still needs a lot of work). He then said that since Paul had done so well with the spinal tap, and since we had come from Atlanta, he was going to do the shuntgram as well. That was the original test they had wanted to do, but felt the spinal tap was more urgent. They would be able to do the shuntgram at 2:30 PM, so they released Paul at 11:30 and we went back to the hotel and had something to eat. We were all able to get a little rest and then we went back. The shuntgram was done to see if the shunt is actually working. They put a small amount of low radioactive material in the reservoir of the shunt and then watch the monitor to see the flow of brain fluid in the shunt. Dr. McLanahan first tested the pressure in Paul's brain and it was normal. He said that he believes it fluctuates up and down based on the activity level, but that the leak plays a part in causing low pressure. As suspicioned, the shunt is not functioning properly. The radioactive material never moved out of the reservoir. The pressure in the brain is not enough to open the valve of the shunt. The doctor thinks that throughout the day, when pressure builds, the shunt may fluctuate between overdraining and underdraining over the course of days. He was pleased to see that the fluid sample he took was very clear.

The doctor said that they will probably do the surgery and will also keep Paul for extra days to do a test of the shunt outside of the brain. They would force fluid into the brain to see if the brain can absorb it on its own. If it does, there is a possibility that Paul would not need a shunt. He said that the issue of the enlarged ventricles is also a complication of its own and he would be working to solve that problem. He is going to review all the tests with some other doctors and would call us with his results and suggestions. He also said something about the possibility of Paul having some work done on the inner ear and seeing if hearing could be restored. He had asked Paul if he could hear anything out of his left ear and Paul said only a very little. We asked the doctor to put together the team of doctors needed to restore whatever is possible. He said he knows of a doctor who has done some very impressive work with the facial nerves and he would consult him on this case. We believe we finally have someone who is looking at the whole picture and is willing to help Paul find a more full recovery. We left the hospital with a cautious optimism! Jon, Jerry and I could not quit talking about all the hopeful things that had happened and prayed with Paul that night that God's hand would lead the doctor in his research. Paul ate a huge dinner and was almost giddy with the news he had heard that day! While we are beginning another stage in our long walk, we trust God is with us.

The best news of all was on our way home. Jerry had given Paul his iPod to listen to a song and Paul put the earplug into his left ear. Jerry was wondering why he did that but didn't say anything. Paul fidgeted with the volume, then he pulled out the plug and said excitedly, "Mom, Mom, you won't believe what happened!" I was driving and just glanced back for a moment and asked him what it was. He said he had put the plug in his left ear and he didn't hear anything, then moved the volume up a little, and heard a tiny bit of noise. He then increased the volume again and he could kind of hear the music. He heard the noise from the car and road, so he put his finger in his right ear to block out the other noises and he could actually hear the words of the song........IN HIS LEFT EAR. He was laughing as he talked, he was so happy. I wanted so much to hug him! We were all very excited about it. (Late last night, we tested it again and he could hear words I spoke into his left ear!) If nothing else were to come of these past few days, the level of joy and hope they restored in us has been a wonderful gift. There was more than ONE breadcrumb dropped on our path, leading us along!!! God has not failed me once in this past year, helping me keep my faith and trust in Him. He helps us in our times of need and provides us so many joyful moments. I would not trade away any lessoned learned or the pain experienced gaining the lesson. It has only increased my love and dependence on God, which is the simple lesson!

The first stop for us when we came into the neighborhood was to pick up Abby from the Hufford's house. Paul was not going to allow us to go home first! We pulled into their driveway and within seconds Abby came charging outside. She loves Paul so much and he could not make his love for her anymore evident. Then Anne drove by on her way to our house to pick up some of her mail, so she pulled into the driveway. Our son Jon had just called me at that moment to get the news also. It was a very fun and lively homecoming. Paul got on the cellphone to tell Jon about what had happened with his ear. He was laughing and enjoying the moment with his brother, his dog at his side, while surrounded by family and friends. God's love so visible in that moment!

I was outside yesterday evening, when we got home and I was trying to get the Pansies planted that I had purchased weeks ago. They were in pretty bad shape and I had promised Jon I would not allow $60 worth of flowers die! While I was planting them, our neighbors, Ron and Connie came home and of course, wanted to know how it went. Connie said she had been checking the blog all day and was hoping it was not bad news that kept us from posting anything! Our other neighbor Barb came over also and I told them everything that had happened. It was so wonderful to personally share our joyful news with these special people.

Paul got up this morning and the level of joy is still with him. He left the house with his dad and Jerry to go to morning Mass as I got ready to leave for work. I could hear them all laughing as the door shut.

Another day for us all to share the love of God with our brothers and sisters in Christ!
May His love lift you in spirit and lead you to your highest good.
Love,
Jon and Rebecca
(I've got some pictures to post, but unfortunately what I don't have is the time! Will do it later tonight.)