ZZZZZZzzzzzzzzzzzzzz.............

Thursday Night

It has become obvious that I still have a lot to learn about the recovery of the surgeries and hydrocepholus itself. When we brought Paul home on Sunday, I thought he would be up and about within a few days. His headaches continued and he spends most of the day sleeping. I called the doctor's office to get a better idea of the parameters of what we should expect and found out that he will experience pain from the surgery and that the headaches could actually be present for a couple of months. I also found out that I can give him the prescription pain medication without fear of his becoming addicted, which was a huge concern of mine. I was not sure how much he could take without an addiction problem being added to our list, so I was basically depending on Tylenol to help with his headache pain. I was told that with all the surgeries he had, that he didn't really have the strength to deal with the pain, and that he needed the stronger pain medication to allow him to rest better. I started to give him the pain medication yesterday and he slept much better and longer and his face reflected it this morning. When he was awake today, he had a good appetite, and actually started today to have small conversations, which he had not done since last week. I was getting so worried about his irritability and his not talking, just using the sign language he used early on in his recovery. I could not believe we were regressing so badly! I have been so tired also, because he was waking every 2 hours throughout the night to use the restroom or ask for medication. Last night he slept for 5 hours straight and this morning, woke up so much more refreshed. I would estimate that he improved a good 15% over yesterday. He has had 3 good meals today and even got up on his own and came downstairs to see what he could have for lunch. He is not able to sit up for more than a few minutes, then his head hurts again. Later this afternoon while talking to our doctor's nurse, I found out that that can be common - headaches for a couple weeks to months after the shunt is put in. With the 3 surgeries in 4 weeks, he is going to be really sore.

I started to try to get more research done about this condition that will be with Paul for life. At first, I was almost afraid to look. I had the same feeling as when I first searched the internet to get more information about brain injuries. It was a very frightening thing to read about all the problems associated with Paul's injury and I really didn't have the strength to read about it in that first month. I was working hard to handle the fact that he might die, or might not come out of the coma for months and all the problems that would incur. I remember so vividly, walking the hallways and realizing I had not taken a breath and then telling myself to just breathe. The last thing I wanted to do was see all the things that could become complications! Ignorance is sometimes truly Bliss. And that is how I felt when I heard that Paul had hydrocephalus. At first, I didn't realize at all what it meant. It seemed simple enough - drain it and move on. As the complications arose, I realized we had to know all about it to help Paul live with it. Plus, it would help us ask questions that were more timely and important. After talking to Kelly, she put in a lot of hours and sent me a number of very helpful sites. I have to admit, it will be in our best interest to learn as much as we can, so we can find good doctors to keep us on track with Paul's recovery and also to find others who have helpful hints that will possibly help us avoid some pitfalls. Of course, I will probably have to say my prayer "Jesus, I trust in you" a couple hundred more times a day as I read through all these articles. Some of it sounds pretty scary. But as I reminded myself today - God brought it to us, He will bring us through it. We were able to get some very good referrals and are in the process of getting a neurologist who can give us a second opinion. We still have all the confidence in our neurosurgeon. But with something this serious, we thought it best to at least get a second opinion from a doctor who also specializes in the treatment of hydrocephalus. Paul has a follow up appointment with our doctor on Monday. That will give us a better idea how well this programmable shunt is working. It is hard to know if the headaches are from the surgeries or the amount of fluid in the ventricles. I pray we don't have a long road finding the solution to this complicated problem.

I am waiting to hear whether I will be able to work something out with my job. They need me to be able to work by the end of April, or the position will need to be filled by someone else. It is my hope that they will approve my working from home for a period of time. My understanding is that if this is approved, it will be for a short amount of time, then I would have to come back and work in the office. We will then have to find someone to stay in our home with Paul, depending on his condition. He will hopefully be in rehab by that time, so that we might need someone only on a part time basis. I am praying for God's guidance in all of this and ask you to pray for me to know His will.

I will try to post some of the pictures taken of the Easter Vigil. Everyone looks so joyous - it helped us feel their joy also. I wanted to do a posting sooner, but have been literally wiped out these past few days due to lack of sleep. This evening ended a restful day, and I have had the added benefit of the sound of the rain falling softly as I typed this. (If Michael didn't suffer so badly from allergies, the windows would be opened just a crack, so the fresh smell could float in also!) Just as the rain washes everything clean, the image of Jesus in the Divine Mercy picture above me reminds me that the pale color represents the water that flowed from His heart when pierced as He hung on the cross. It is a reminder of the Water that makes souls righteous, through Baptism and in reality, the merciful fountain of grace flowing from the pierced heart of Christ on the Cross. How abundant that mercy is, which is offered to everyone. Seek and you shall find!

With not much in the way of big news these last few days to post for you to read - guess you are all about ready to ZZZZZZzzz about now.................smile.

Goodnight and love to everyone,
Jon and Rebecca