Tiny Bubbles

We took Paul to his appointment on Thursday and he had the staples removed from his surgery. The doctor was not available to look at the CT Scan that was taken on Monday at the ER. Needless to say, I was upset that we had already lost time waiting those 4 days for someone look at it, after we were told by the ER physician to take the CT to Paul's regular neurosurgeon to view immediately. There appeared to be complications relating to the surgery. After much discussion with the nurse practitioner at our Thursday appointment, she had a pediatric neurosurgeon who was in the office look at the scan. He sent a resident doctor in to do a procedure to see if the shunt was working. They had to sterilize Paul's head right over the shunt mechanism and then stick a needle into the reservoir to see if there was fluid in there. There was a great deal of pain for Paul and I had to hold his hands down as the resident pushed on Paul's head, along the tubing. I still tear up as I picture how much pain this caused Paul. As soon as the doctor stopped pressing on the tubing, Paul immediately asked, "Are you done?" When the doctor said yes, Paul said, "I am sure glad to hear that." It appears there was air in the tubing coming out of the ventricle, which the resident said was showing up on the scan. There was air in the ventricles after the surgery and some had passed into the tubing and created an air pocket, thus keeping the shunt from working properly. I knew something was not correct about this last surgery, as Paul was in worse shape after the surgery than the weekend before. He had been with his friends, was walking a lot and visiting neighbors, gone to the movies and out to eat at his friend's house. He has not been out of bed much since then, except to take walks each day. It is a daily struggle to get him to do that, as his head is so painful. He walks only to the end of the street and back (about 2 blocks). We were told that within a few days, the shunt should start to work properly. We are still waiting for that.............sigh.

James has been so patient through all of this, joking with Paul to help get the cooperation he needs. James has a great sense of humor and he makes me laugh a lot as he works with Paul and finds ways to get Paul to go along with the game plan. Paul starts out with a definitive no, but James is usually able to get him up and out of bed through joking and then persistent means, like gently moving Paul's legs to the side of the bed to start Paul physically, as he talks to Paul about why it is all so important. He follows up with a joking remarks to lift Paul's spirits and get him out of his negative mind set. James is a real trooper and a loving, faithful brother. What a blessing he has been to us.

Kelly (who became our medical courier) got the medical records delivered to the doctor in Chicago. He said he would do a conference call with her and us either today or Monday. He said that until he has read the records, don't move Paul. This past week, when my friends at work heard we might take Paul by air ambulance to Chicago, as a way to get him to this new neurosurgeon, they immediately started looking for ways to do this without a lot of expense. There is a group called Angel Flight, where private plane owners will fly people for free. Angel Flight of Georgia has agreed to do this for Paul, once the doctors release him to travel. My friend Staci Autry was able to get us this connection. Once again, we could not believe the quick response and action taken on Paul's behalf. An unplanned visit by Paul to GuideOne Insurance occured on Friday morning. I realized I didn't have my cell phone with me and called home to see if James could bring it to me. I am only about 4 miles from the office and knew it would be a great excuse to get Paul out of bed. James brought him and instead of just bringing in my phone, he also walked Paul in. There was Paul ( to my horror, unshaven and wearing the same shirt he slept in) standing in the reception area of my office. Word got out immediately that Paul was in the office. I watched as almost everyone who was at work that day, came walking towards us. Paul spoke to only a couple of them, but when asked, said he did not remember them. Everyone was standing around talking, and Paul needed to sit down. He went to my cubicle and sat down and immediately opened the computer to the internet. He went straight to the Georgia State University web site. I was glad to see him do this. He has not sat at a computer for months. After Paul left, everyone said they thought he looked good given all the set backs.

There is another CT scan scheduled this Thursday. I guess the doctors now want to keep a closer watch on the effectiveness of the shunt. I had asked them how would we know if it is truly working effectively, since it was explained to me that the size of the ventricles alone is not an indication of whether it is working. My understanding of this is, the ventricles may never go down in size, but the pressure in the brain can stll be normal. The headaches may not be caused by the hydrocephalus, but may be post traumatic headaches, which can occur after severe brain injuries. There may be a couple of contributing reasons for his headaches. Getting the hydrocephalus issue settled will then allow them to focus on other reasons. Paul may very well need medications to control headaches for the rest of his life. I just hope someone can find what is needed very soon. Paul was able to do most things when his headache was on a level 4 on a scale of 1 to 10. But they have been constant at 7 and 8 since this last surgery.

Paul has participated in saying the rosary 3 times this past week, and it made our family very happy to see him do this. He still asks me to pray with him for relief of the pain, but to a lesser degree than before. He doesn't really talk at all anymore. He is back to eating lunch and dinner, but not breakfast. He still has great diffculty swallowing liquids. He has improved in that at the beginning of the week it took him 8 minutes to swallow 2 pills, it now only takes about a minute and a half. I was sitting on the side of his bed, waiting for him to swallow and flashed back on when he was up and excercising with Jonathan. That was in March. His hair had grown back and he was standing by himself, steady and lifting the weights. I fought back the tears as I looked at him struggling to swallow 2 pills. I stopped the feelings of despair that were creeping into my mind and decided to use that picture I had in my head as our new goal to work towards. As Jon and I talked this morning, I reminded him that we need to chose joy and keep fighting to remain positive in our outlook and behavior. Our other sons need us to keep guiding this ship forward. We talked about the fact that with so many prayers being said for our family, that is cause enough for joy!! I remember a long time ago I got the image in my head that in life I have 2 choices, I can choose 'chocolate cake' or 'beets'. I always try to chose the cake. It takes effort and a full decsion on our part. Today we are going to eat some cake.............smile.

After Jon and I talked this morning, I got a voice message from my friend Dee. She was at the Eucharistic Congress and said that they were keeping Paul in their prayers as they spend the whole day today with Catholics from all over the state. There's the ice cream to go along with our cake today!

Mary, Queen of Peace, pray for us.
Love,
Jon and Rebecca