Peter, Paul and Mary...............I Shall Be Released

Thursday 6/29

Today is the Solemnity of Saints Peter and Paul. I found this out as we sat down to wait for our appointment with the headache specialist. I decided to read my Magnificat instead of the usual magazine offerings in the doctor office. I needed to settle my mind down and just find a 'pocket of peace' while I could. I thumbed through my prayer book until I got to June 29th and there it was - this wonderful feast day where we remember these incredible apostles. The very first thing I read was:
"In their apostolic mission, Saints Peter and Paul were obliged to face difficulties of every kind. but, far from deterring their misssionary activity, these difficulties reinforced their zeal for the Church's welfare and for the salvation of mankind. (Here's the part that jumped out at me!) THEY WERE ABLE TO OVERCOME EVERY TRIAL BECAUSE THEIR TRUST WAS NOT BASED ON HUMAN RESOURCES BUT ON THE GRACE OF THE LORD, WHO DELIVERS HIS FRIENDS FROM EVERY EVIL AND SAVES THEM FOR HIS KINGDOM. May our holy patrons, Peter and Paul, sustain us and obtain for us that missionary zeal which made them witnesses of Christ to the ends of the then-known world" Pope John Paul II

I chuckled and read it out loud for James and Paul. Here we were, looking once again for human resources to solve our problem. I told them we should say prayers to God before we met with the doctor. We prayed to Mary, Our Mother, and asked Sts. Peter and Paul to pray for the medical professionals who would come into contact with Paul, so they would be led to do their best. I realize that whether they respond to the whisperings of the Holy Spirit is between them and God. What we do with our day is between us and God. And God reminded me again this morning to stay close to Him and look to Him for all that we needed.

This new neurologist, Dr. Weisman, took time with us and then said he feels that there are probably a couple of causes of Paul's headache. The brain injury itself can leave a person with significant headaches. They are difficult to help and can take a lot of trial and error in finding the right combination of medicines to control the pain. The brain pressure is also something that needs to be monitored and the one reading Emory did is not enough to gauge the pressure. It can be a normal reading for most of us, but with a brain injury, the 'normal' range is very different due to the damage to the brain. Another issue is Paul may be suffering from rebound headaches, caused by the Tylenol use and the narcotic medicine prescribed. This doctor wants to get Paul off that completely. The fact that Paul is 'horizontal' most of the day is contributing to all of this. The doctor has given us 2 different medicines to work towards getting Paul up and able to function. One will, over time, help Paul sleep through the night, so he is rested in the morning. The other is to help control the pain. Paul's day is now going to start with a 30 minute walk to get his system going. If he has headaches while laying down, with no real relief, then he is going to have to work as best as possible through the headaches. The doctor said that he can actually try to go to work, maybe for a couple of hours each day and see if he can handle that. I asked if the size of the ventricles had anything to do with the headaches and he said it is hard to say how much any of this is the main cause. He is going to obtain records from Emory and will review the CT scans and we will see him in 3 weeks to follow up. He said at that time, it may be necessary to have the shunt adjusted again. I was so glad to hear that he will follow up sooner than the 2 months every other doctor said they would see Paul again. My prayer is that he will take more interest in Paul and get us moved up a notch in this recovery process. I have to admit, it seemed evident that the last doctor took one look at Paul and did not see what was possible, but what was lost and he didn't want to fight for the possible.

Our appointment with the neurosurgeon on Wednesday left us extremely disappointed. He never really answered our questions about the functionality of the shunt. He basically said there was nothing he would do and he would see us in 2 months. From our history so far, too much can happen in 2 months. He also said Paul was ready to move on to rehab. (Dr. Weisman said Paul is not ready for inpatient rehab, he would not be able to last the full 4 hours. He needs to do outpatient only at this time. More differing opinions!) Jon tried very hard to get better information from the neurosurgeon, but he would only give vague answers. We left feeling like crumbs that got flicked off the table. We felt pretty discouraged after Wednesday's appointment and that is why the message I read first thing Thursday was so great a reminder. Through God's grace, us 'crumbs' will be picked up off the floor! It gave me the strength to remain hopeful and we will continue our search for the person who will know the answers. I told Jon that at this point I could handle the idea that Paul might not ever being able to do much of anything again. I could handle having to be his caregiver for life, but I am praying that we will be led at the very least to the answer of relieving his pain. I just want someone to help him with his pain. In answer to this, I was reading Medjugorje Magazine and last Saturday was the 25th anniversary of the day Mary, Mother of God, appeared to the 6 visionaries in Croatia. She is still appearing to one of them each day. Her message has remained the same over all these years. Conversion of our hearts through prayer, fasting and receiving the sacraments of the Eucharist and Reconciliation as often as possible. I have fallen away from fasting on Wednesdays and Fridays as Mary has requested. When I first learned of this request in the mid 1980's, I worked hard to do all that was asked. Over the years, Jon and I were graced to understand how important it was to pray together as a family and to be better examples to our children. After our son Jon went to Medjugorje, he came back with a spirit that was extremely contagious. We took his suggestion of setting up a place in our home that was for family prayer. We started to say the rosary as a family as often as we could and Jon (husband) started to say all 15 decades of the rosary each morning at 4 a.m. We began going to 6:30 a.m. Mass each day. Jon and I went to Adoration at all hours of the night. Our faith grew by leaps and bounds and it is what has helped us hold tightly together during these past 7 months. This latest event in our lives has opened our eyes even more to the message of conversion. We thought we knew how to pray and depend on God! We learned He expects more. We thought we knew how to sacrifice for Him. We learned we can do more. We asked that we would always do His will. We have a very new lesson of what He will ask. The awesomeness of our lesson is still hard to comprehend at times, but in hindsight, it has all been part of His plan for our continued conversion of heart, which will help us to love His Son, Jesus, more perfectly.

We are all being asked to be just like the first apostles. I heard it before, but now I understand it better. I can't imagine the trials they went through and the frustrations they encountered, but God proved Himself faithful to His loving servants. They died as martyrs at the end, and we have our faith today because of these first few who held tight to the knowledge that Jesus came to save us and they loved him. That's my decision again today and I am going to keep all that is in my day between me and God! I don't remember when I stopped fasting regularly, but if it is a way for my continued converstion to take place, I need to put it back on the agenda. I believe in my heart that it will be through the examples of those saints who went before us and Mary's guiding words to pray, fast and remain open to God's will that ...........We All Shall Be Released.

May Jesus open the gates of heaven to all those who have put their faith in Him,
Love,
Jon and Rebecca

Don't Let Me Be Misunderstood

We met with a doctor who has given the orders for rehab for Paul. The rehab department will set up a schedule for Paul for Physical, Occupational and Speech therapy to begin. They have also been instructed to get Paul an appointment with a Neuropsychologist who will assess Paul's cognitive abilities and then a psychiatrist to work on pain management.

We have an appointment (yahoo) with the neurosurgeon tomorrow morning. We have a long list of questions to ask and will try to get a better sense of why he does not think a cisternagram be done. We, on the other hand, are hopeful that the theory presented by Dr. Ghaly can be ruled out. We may resort to pleading and begging.......................smile! It would sure help put our minds at ease. Another thing we have scheduled is a headache specialist. He is to be seen on Thursday. If the neurosurgeon can prove the shunt is not the cause of the headache and it is working in a functional manner, then we have to find the reasons for the headache, which can be tough to do if it is due to the actual brain injury. Chronic and debilitating headaches can occur from traumatic brain injuries. We just need some other things ruled out also before resorting to total dependence on drugs.

Paul now weighs 139 pounds!!!!!!!!! I thought it was about time we supplied some good news on this site! He is also working towards swallowing enough liquids to get the feeding tube out. It is a goal James set for him and he is working hard today to swallow the 64 ounces of fluids he needs each day. Also, after James kidded him about being heavier (calling him a name), Paul told James that once he gets back to working out, he was going to punch him for the remark! Paul asked James if he understood what he just said and James said he would be happy to see Paul 'bring it on'. They both laughed and James told Paul to make that another goal for himself. Then Paul brought the glass of water he finished to the kitchen sink and had both arms up in the air to show James he accomplished the task of drinking the whole thing . We have a goal to be watching for.................and I am not talking about Paul hitting James!

O God of light and glory, you are the beauty we seek, the power to whom we entrust ourselves, the love for whom we hunger and thirst. Make yourself known to all people through Jesus Christ our Lord.

Rejoice in the Lord always,
Love,
Jon and Rebecca

Stormy

It never ceases to amaze me how God continually speaks to us through scripture, with the message always being pertinent to our lives. I will never believe it is coincidence, as it happens too often ..... like on Sunday. His words quieted the storm.

On Friday we were able to go to the 6:30 AM Mass on the Feast of the Sacred Heart of Jesus. As explained in my prayer book, the Sacred Heart of Jesus denotes the entire mystery of Christ, the totatlity of His being and His person. It is quite rightly considered the chief sign and symbol of that love with which the divine Redeemer continually loves the eternal Father and all human beings without exception. In the reading that day, St. Paul writes "For this reason I kneel before the Father, from whom every family in heaven and on earth is named, that he may grant you in accord with the riches of his glory to be strengthened with the power through his
Spirit in the inner self, and that Christ may dwell in your hearts through faith; that you, rooted and grounded in love may have strength to comprehend with all the holy ones what is the breadth and length and height and depth, and to know the love of Christ which surpasses knowledge, so that you may be filled with all the fullness of God." I prayed again that my heart would be the heart of Jesus in everything. From the nine day novena to the Sacred Heart comes the prayer, " Heart of Jesus, I give You my heart. I consecrate my entire life to You and I place in Your hands the eternal disposition of my soul. I ask You for the special grace of uniting myself with Your will so that I might be worthy of receiving Your promises and one day come to share with You the joy of heaven. Amen" And so began our day.


Jon was able to get the nurse to call us back and give us the results from the latest CT scan. She said that it showed the ventricles were smaller and the air was being absorbed. She also said there was no air showing in the shunt tubing, creating an air pocket. I was so relieved to hear this and it seemed to agree with how Paul was doing in the prior days. He had some really good days last week. But then on Friday, James called about noon and said he had not been able to get Paul up for a walk or lunch or shower. Paul was adamantly not getting up. I told him I would be home soon for lunch and would help him. When I got home, Paul's face told me everything. He was in a lot of pain. I got him to eat and got him medication to help ease the pain. By the time I left he was able to get up and go on a short walk with James. He was not able to do anything else. Saturday was much like Friday. We debated about whether to take him to the ER, but decided that it is always such a futile effort, with too much strain on Paul. We got him to walk a couple of times, but that was it. He ate fairly well, but that was the only thing positive. I felt very 'Stormy' inside, wondering what to do for him and wishing we had a doctor who responded better to Paul's needs. If we went to the ER, it would just be another complete stranger we would have to tell the story to, and then be given an inadequate response. Besides, we had been told that the neurosurgeon had been out of town, so the probability of his ever knowing we were in the ER was slim. He has never been called before when we were there. That is the main problem with working with Emory. We see a different resident doctor everytime and when we call the office, we only get to speak to the nurse. We have yet been able to see the doctor who did the last surgery. Jon did make an appointment to see him this week. We really need to work on getting someone to agree to do the cisternagram to rule out possible CSF (brain fluid) leakage.

On Sunday, Paul did go to Mass, but he had to sit through most of it. He was acting like he was in a fog. I was churning inside as I mulled over what we needed to do for him. I looked at the tabernacle and said to Jesus, "here he is, I bring him before You, please help him." I was trying so hard to control the flood of tears that filled my eyes as I pleaded. Then came the gospel reading.
Mark 4:35-41
On that day, as evening drew on, Jesus said to his disciples: "Let us cross to the other side." Leaving the crowd, they took Jesus with them in the boat just as he was. And other boats were with him. A violent squall came up and waves were breaking over the boat, so that it was already filling up. Jesus was in the stern, asleep on a cushion. They woke him and said to him, "Teacher, do you not care that we are perishing?" He woke up, rebuked the wind and said to the sea, "Quiet! Be still!" The wind ceased and there was great calm. Then he asked them, "Why are you terrified? Do you not yet have faith?" They were filled with great awe and said to one another, "Who then is this whom even wind and sea obey?" Fr. Paddy's homily was a great reminder that we have to be 'still' so that we can hear the voice of Jesus. With all the questions about what we should do next for Paul, churning around like a storm in my head, I needed to find time to be still and listen. When we got home, we got Paul all settled and comfortable and then I went out to my rose garden and pulled weeds. The soft smell of the flowers and the sounds of the birds quieted my mind. I prayed to Blessed Mary, and asked her to help guide me with her motherly hand, and to pray for me that I would have a more perfect love of her son, Jesus. The garden was reflective of my state of mind...............full of weeds, which distracted ones eyes away from the beauty of the garden. Once cleared, the roses and other flowers were the main focus. While I had worked in the hot sun, clearing the weeds and my mind, I found myself dwelling on something I had read. Blessed Ammonas (he died in 369, was a bishop and follower of St. Anthony of Egypt) wrote the article.

How to Still the Storm
I, your father, have endured temptations both openly and in secret; I proved strong in waiting and prayer, and my Lord has set me free. Now it is your turn, dearly beloved. You have experienced God's blessing and now you must experience temptations too, until you have surmounted them. Then you will grow in stature; your dignity will increase and great joy will be given to you from heaven, a joy beyond your understanding.
What does it mean to surmount temptations, and what is the cure for them? The answer is this: you must never grow weary but pray to God with your whole heart, praising Him and being patient in all circumstances.
The Holy Spirit deals thus with those that seek him and fear God, withdrawing to a distance and leaving them to themselves until he knows whether they will seek him or not. There are some people who after he has abondoned them and gone away, sit down overwhelmed by disgust, and remain immovably fixed in it. They do not pray to God, asking him to remove the disgust from them and cause the joy and sweetness they knew earlier to return, but through carelessness and self-will they become strangers to God's sweetness. Their eyes are blinded and they fail to understand what God is doing.
If, however, they become aware of this disgust, so unaccustomed and alien to their former joy, they ought to pray to God with tears and fasting. Then He of His graciousness, seeing their heartfelt sincerity and knowing that they are praying to Him with all their hearts and entirely renoucing their own will, would give them joy greater than they had before and make them even stronger. This is a sign of God's work in any soul that seeks Him.
**********

In the quiet of the garden, I heard His words. Be still. Pray and fast. I need to meet God where He is, renounce my own will. I had begged God to just 'give us the miracle' of an instant healing of Paul's pain all last week. It added to the storm in my mind, as I tried to bargain with God and 'will' it to happen. While that would be an easy answer for Paul and the family, it obviously is not God's answer. His work is still being done in us and I guess there are more 'weeds' that have to be pulled up in my soul's garden. He is asking that we keep "praising him and being patient in all circumstances."

Paul is supposed to start rehab today at Emory. He is still in a lot of pain, but we are going to take him there. If for nothing else, I need them to see how much pain he is in and hopefully can get someone to listen to us. I would like to make sure that he does not have a problem with the shunt. Paul told me last night that the area around his shunt felt bigger. He would be the one who would know that best, since he always rests his forehead in his hands as he lays in bed. One more day we will walk forward and will place our trust in God's love and that of the Sacred Heart of Jesus.

" Jesus, we offer You all our prayers and actions, joys and sufferings of this day, through the intercession of the Immaculate Heart of Mary."

Love,
Jon and Rebecca

Do You Know the Way to San Jose?

Monday morning I faxed the opinion summary from the doctor in Chicago to our doctor here who performed the last surgery. And the waiting began. I waited Monday with no word that the fax was even received. On Tuesday, I called and spoke to the nurse practitioner and she said she did not know if the doctor received the fax or not, she does not get his mail if it is addressed to him. I faxed her a copy to make sure someone would address it and just acknowledge that they would consider the findings of Dr. Ghaly. And the waiting continued. On Wednesday afternoon, Jon called and was able to speak only with the nurse again. She said Dr. Barrow had looked at it and did not agree with the findings and if we wanted to speak to him, we could schedule an appointment next week. He usually follows up with patients about a month after surgery, but we could see him next week if we wanted. The summary from Dr. Ghaly had suggested a cisternagram be done to rule out the possiblity of a leak of brain fluid, as there appeared to be signs of air in other areas of the brain than the ventricles. We know there is air in the ventricles from the last surgery performed. But if there is air elsewhere, then we have another significant problem that will need to be addressed. But we are having great difficulty getting anyone to agree to do the test to rule out this scenario.

As we walk to California, we have reached a point where we have to stop and ask...........Which way do we go?

Jon and I sat last night, just looking at each other. We were at a loss as to what to do next. If it is not safe for Paul to travel and we can't get the help we need in Atlanta, what do we do? The confusion and the sense of helplessness at this point made Jon suggest we say a rosary and then get a good night sleep. We got Michael and went to Paul's room. We barely got started and Paul said he would lead us. Mike was falling asleep since he had been working outside all day in 95 degree weather, but when he heard Paul leading the rosary, he started to pray out loud also. It made me smile! After the rosary, Jon and Mike went to bed. Paul said he was not tired and asked if we could take a walk. It was 9:00 pm. I got my shoes on and when Jon heard us getting ready to go outside, he got up and got dressed also. He didn't want us out at night alone. We walked down the street and I mentioned that Abby dog really needed to get more excercise. I said that since it finally cooled down to the 80's, I should take her to the church parking lot and walk her. When we got back into the house, I called James and asked if he would meet me there when he was done working out. Paul said he wanted to go also, and he would just sit in the car. He was still not tired! James and I walked around the parking lot and let Abby run good and hard. It helped the level of stress I had been feeling and James and I got to have a good chat. For the first time in weeks, I slept like a log, thanks be to God! I found such comfort being so close to the tabernacle in the church and it brought the peace I was seeking.

Today, I got up and read through today's readings in my Magnificat book. I smiled at the very first thing I came across.

WORD OF GOD (Isaih 42:16)
"I will lead the blind on their journey, by paths unknown I will guide them. I will turn darkness into light before them, and make crooked ways straight. These things I do for them, and I will not forsake them. "

I am holding onto this today and am finding the inner peace needed to keep moving forward. We have to decide what course to take next. There was a CT Scan done again today. We will call the office later today and see if they can give us the results. I am mostly concerned about possible overdrainage. If the shunt is now working properly, there is the chance of this happening. The shunt was set at the same setting as the one they replaced, but supposedly, that one was never working. We don't want to travel without knowing the status of how effectively (or over effectively) this shunt is performing. I called Jon today to discuss what we might want to do next - stay and try to keep after the doctor to run the cisternagram or go to Chicago and chance the trip. The test woud surely be done in Chicago, as Dr. Ghaly has made that suggestion to the hospital here. After asking Jon what he thinks we should do, he laughingly said it would sure be great to finally get to 'See the man behind the curtain', referring to the Wizard of Oz. He said that it is hard to make the decision without ever having been able to speak directly with the neurosurgeon here. We have seen a couple different resident doctors (who were not even present for the surgery done on 6/6 ) or have gotten messages second hand from the nurse in the doctor's office.

We are praying for the guidance and I know it will come.

Paul is actually doing very well these last few days. He was up all day yesterday and has been playing the piano a lot more. James had him doing 'squats' (not sure I spelled that correctly) and excercises and Paul is asking to take walks 5-6 times a day. He is eating very well - had 2 sandwiches at lunch yesterday and then had a brownie and ice cream. At dinner, he had 3 very large pieces of pizza and asked if anyone minded if the last piece could be saved for him later on in the evening. He remembered it was saved and before our 9:00 stroll, he went to the refrigerator and got it to eat while we walked! He still struggles with swallowing pills - takes a good 30 seconds to swallow the pill and the liquid. He never wants to drink anything more than a few sips at each meal, or throughout the day. The feeding tube is being used for hydration only at this time.

Paul did something last night for the first time. He prayed out loud and asked God to help him become the person God needed him to be, whatever that meant. He said since God saved his life, he will do anything God wants of him. He asked for help to get better so that he could begin that life. Again, we got the sense that Paul was not even aware that we were there anymore, as he began his 'talk' with God. Jon and I sat listening, and just looking at each other with smiles on our faces. Paul is very aware that he doesn't hear out of his left ear and that he may never have use of his eye again, but only prays that if God wills it, to please bring about that recovery.

Out of the darkness, we will be led. Paul is surely the one who is leading the way with his example of humility and complete submission to God's will. God is working through Paul in lighting our pathway. All the issues at hand pale in comparison to what is the main one - we are really being asked to trust and remain hopeful as we keep trying to live with hearts that love as the Sacred Heart of Jesus loves. There is a point and purpose to all this indecision and it is by these 'paths unknown' that we are being lead. Thank you all so much for walking with us.

Hello Gabriel !!! I know you have been through so much this last year as you too have worked hard to recover from your brain and physical injuries. You are in our prayers, along with Chip and Eric. Brave and awesome young men...................all of you. Your journeys, with your families who have been in the same set of circumstances, have helped guide and inspire us. We pray we will be of some help to those who come after us! Your mothers have set such great examples before me.

Christ be our light,
Shine in our hearts,
Shine through the darkness.

Love,
Jon and Rebecca

Right Before Your Eyes

Saturday afternoon we got a call from Dr. Ghaly with the results of his review. He did a conference call with Kelly, Jon and me. He explained that it appears that the source of the hydrocephalus might be from a low grade menningitis infection, which has occured because of an apparent leak of CSF (the brain fluid). He said that going back to the scans of Paul's head done from the very beginning, he says the 2 suspicious locations of a possible leak are the orbital fracture and the skull base fracture. The surgery done in December to reconstruct the orbital on the left side of Paul's face may not have been done correctly, or that the skull base fracture has not healed, which has left an opening whereby the fluid is leaking. If there is a leak of the fluid, it means there is 'communication' between the outside and the inside. That means bacteria can come in, where there is the opening. He said he sees air in the brain on a number of the CT scans, not just the last one taken. The last scan shows air in the ventricle, which is a result of the last surgery and it also shows air in the orbital roof. This would not be due to the last surgery, but from the fact that no one has addressed the problem of the leak. He said that we need a state of the art reconstructive surgeon, along with a skull base surgeon to repair the orbital area and the skull base if necessary. He said that a test where they would put a dye into the lumbar spine would show the doctors where the leak is actually occuring. This dye would travel throughout the spine and the brain, just as the brain fluid does. He also said Paul needed to be tested for menningitis. While we were on the phone, he called the hospital ER and spoke to the ER physician. He told him of his suspicions and asked that this be taken care of. He also spoke to the resident on duty for the Neurosurgery department and explained his findings with her. He said he was sending us to the ER, and asked that they please help us with these tests. He said, "Please don't make them come to Chicago, you have a good university hospital that can do these things for them." He told us to be very strong and to remain Paul's advocates for the care that is still needed. He also said that our persistence is what has saved Paul's life. He told us to remain strong in our faith and to trust.

The most heartening news he gave us was that he did not feel the severity of the brain injury was at the level stated by the original hospital. He did not see signs of this on the scans taken in the days following Paul's accident. He said he saw the clot that was so concerning in the main vein that caused us to fear for Paul's life, but not the difuse axonial injury. He said he is very confident that once these other issues are handled, Paul should recover to a very favorable degree. Whether this could be a miraculous cure or just an incorrect reading of the scans, we are so grateful to God for all that He has done for Paul. We will wait in joyful hope that we will see great progress once we can move Paul's recovery forward.

We went to the ER immediately after Dr. Ghaly spoke to those doctors. When we got there, the doctor who had been on duty was not there, nor did he give the information to the next doctor. We explained what had taken place and the tests that we would like to have done. We were told that the menningitis test was already being conducted. I asked how that was possible and was told that when they took the air out of the shunt tube on Thursday, they did take out brain fluid and had sent it to be tested for menningitis. We were upset that no one told us they were concerned about menningitis, nor that we were told this test was going to be done. We were relieved to hear that the test was still showing negative in the lab. We were told it takes 4 days to get the final results. When we asked about the other test that was suggested be done, we were told that without the directive coming from the neurosurgeon whose care Paul is under, they could do nothing for us. They did do another CT scan and it showed that the air in the ventricle was down in size and so was the ventricle size. We take that to mean the shunt is doing its job. We were a bit deflated that no one took us seriously nor did they tell Dr. Ghaly or us that a menningitis test was already under way. We got home after 10:30 PM and fell into bed.

On Sunday morning, amazingly, Paul got up for Mass. He wanted to go since it was Father's Day. Our family joined Bev and Joe at church. There was not enough room for me to sit there, so I sat with our dear friends, Mark and Patty Palmquist who were behind. I didn't mind at all, as I could look at my sons and husband as I prayed for them! Paul held onto his dad the whole time, as he is pretty weak. What a gift for me, as I looked at all my men.
After Mass, Paul said he wanted a doughnut, but did not feel up to staying. I quickly got him a doughnut and he ate it on the way home. It was great to see him actually ask for food! We received the copy of Dr. Ghaly's summary that would be given to Paul's doctor. It was a very thorough summary, referencing a good many of the CT scans and his opinion of what he was seeing, along with his commentary on the records he read. He has made a number of suggestions and it is our hope that they will be reviewed and acted on. Dr. Ghaly mentioned that he felt these things should be acted upon quickly. We hope it will!

I faxed a copy of the report to the doctor here in Atlanta, asking that an appointment be set up so that we can discuss the findings and a plan of action. I have to admit, I had a terrible night's sleep as I thought about what kind of a response we might get. We don't want to offend anyone, we are just desperate to find solutions. While we are excited that help may be just around the corner, we are also aware that this summary may not be taken seriously, and that means we would have to continue to search for someone who will give it careful consideration. And, Paul is not to be moved because any significant change in air pressure could cause a real problem for him. I woke up and got ready for work and was feeling anxious about what kind of response we would get. As I was drying my hair, I asked God again in my prayer to him - to what point and purpose was all this. I know that His way is what I have prayed to follow and I know that the reasons are His. But I found myself saying that I had to just wonder what all this was about. There are surely many reasons we are being asked to carry this particular cross! But right after I wondered out loud what it might all be about, I had a thought come into my head. I remembered the Rosary Walk we have done for the past few years and how I missed being part of it since Paul's accident. My very next thought was how I used to always voice an intention for the doctors who performed abortions, that great mercy would be theirs. As soon as I remembered this, I turned off the dryer. I smiled as I realized that God was answering that request of mine. My suffering might just be reparation for the sins of one or more of the doctors I used to prayer for. I found great peace in my heart as I dwelled on this. I had gotten what I prayed for!!! The suffering our family has felt might just be our small part in helping with the reparation of the sins being committed each day as approximately 4000 babies are put to death. I smiled and said out loud, "I can do this Jesus. I can keep doing this for those children and those doctors and those parents." I turned the dryer back on and continued getting ready for work, but with the most happy heart I have felt in a while. A point and a purpose. Right Before My Eyes - I have been shown just a glimpse! God did not have to let me know any reason, but I truly feel He graced me with a bit of what the game plan is. At lunch, I shared my thoughts with Paul and he said that it is a very good reason for his pain and he would remember to offer it up for that intention. With his response, I know for a fact that God is working directly with Paul, to bring about His will. I can't picture Paul responding in that way - not before his accident. The child God intends Paul to be is emerging. I am so grateful to be a participant in all of this.

We have not gotten a response from the doctor yet. Surprislingly, I did not feel anxious during the day as we waited to hear back from anyone. I kept thinking about my newly discovered point and purpose and that is where I found my peace. Thanks be to God. I will try to get in contact with his nurse to make sure it was received by him. It may still be sitting on the receptionists desk...........eek!
Pray that the hearts of any doctor who will take part in Paul's recovery will be open to the workings of the Holy Spirit and that they will be given the wisdom to see what is 'Right Before Your Eyes'.

Monday evening, our friends Sharon and Patty came over for a surprise visit. They came to pray with our family. We prayed over Paul and said the rosary. He led us in the second Luminous Mystery. A great ending to a really great day.

May we all be drawn closer to the Sacred Heart of Jesus, and may we be blessed to see Him right before our eyes .......in all those around us. We ask this in the name of Jesus, Our Lord.

Love,
Jon and Rebecca

p.s. Paul played his classical guitar and the piano yesterday. Jim really got some activity out of him - 4 walks and music! Praise be to God.

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

Oh By Gosh, By.......Ghaly

As you all know by now, I truly believe that God shows us He is with us in many ways. Sometimes it is largely evident and other times, very subtle like the whispering of the breeze. This last time He helped me through a co-worker. I went back to work last week and it was actually a helpful diversion for my mind. James has done a great job of taking care of Paul and I was able to benefit from being able to step back and take some moments to see the 'forest for the trees'. I also got to enjoy being surrounded by the love and care of my many friends at work. After Paul's surgery and the subsequent complications with no real answers, I was at work and started to talk to Monica, who has a very deep faith in God. I knew she would bring me comfort with her wise words, giving some perspective to our circumstances. She said that while we are in the midst of the pain, suffering and moments of anxiety, we can only see what is going on down here on earth. But if we were able to see the view from heaven, we would be amazed and delighted at the rejoicing that is going on in heaven. Our remaining faithful to God's will is the cause of that rejoicing. I found immediate comfort as I pictured all the saints that we have asked to help us pray and the Blessed Mary, all smiling down at our son Paul and I smiled too. The image has stayed with me since last week and Tuesday night I shared this all with my friend Dee, whose son also had a brain injury. All along, She has shared her love and concern for us. She called me to remind me there is a healing Mass this Friday night at the Eucharistic Congress that the Atlanta diocese has every year on the weekend of the Feast of Corpus Christi. When I told her what my friend Monica said, I added that I remembered what I wrote a long time ago in the blog that I had thought about a homily a priest had given about 20 years ago. He said that God's tapestry that is woven each day is visible from heaven, but from earth, we see the backside with all the knots. I said I hoped that if I got to heaven, I would be shown the rose that was woven which represented this event in our life. I hoped it was a yellow rose. Dee said that it would probably not be just a single rose but a garden of yellow roses. Again, I felt real joy as she said that and I pictured it in my mind. The next day, Kelly drove me to work so she could go and get the complete medical records for Paul from the hospitals where he has been treated. She and I came in and walked down to my sister Beverly's cubicle and the first thing we saw was a large vase of yellow roses - opened up all the way! I got tears in my eyes and said out loud, " God is so good to me, He didn't make me wait until heaven." I took one of the petals from a rose and placed it in my daily prayer book as a reminder of the tremendous amount of love that is offered to us by God and his people. A little bit later, I went down to Monica's desk and hugged her and told her how she played a part in the joy I got to experience that morning. You can call it coincidence, but I won't. Too many of these moments happen where joy is dropped off at my doorstep!

Now to the title. Kelly was getting the medical records for what we hope will be our help from heaven above. When Kelly got here Tuesday, I was very thankful for her help. I had prayed to God on Monday night that I knew He sometimes closed doors and then opened windows. We have seen that happen often. I asked if I could possibly just feel a little breeze. I told Kelly she was definitely the breeze that came in our home. She immediately got started with trying to find some options of getting Paul the help he needed. She was on the phone with a friend of hers in Chicago, who mentioned that her husband might have the name of a good doctor. In his work, he deals with the medical profession often. Kelly called him and he said it was so strange that Kelly would call him and ask him this at this time. He had just finished some work with a neurosurgeon who has handled some really tough cases and had been successful with them. He gave Kelly the website of the doctor and said we weren't going to believe what we saw. He was a firm believer in the power of God and actually prayed for his patients. When we opened the site, one of the options was to see pictures of the office. We opened that and the first thing we saw was a crucifix on the wall over the reception desk. There was also a picture of the Sacred Heart of Jesus, and in the Catholic faith, it is always in June that we remember this with the Feast of the Most Sacred Heart of Jesus. This picture is also in our front room, across from the crucifix. He has written 3 books dealing with Christianity and the brain. He does not hide his faith away in this very secular world. It was so refreshing to see all this and to read all of his accomplishments. He lives by these words, DO YOUR BEST, LEARN IN DEPTH, CARE FROM YOUR HEART AND LET GOD DO THE REST.

We called his office and left a message. Later, when we called again (no patience being shown here................smile) he answered and said he recognized the phone number and he said he would call back in the evening. He did and I spoke with him for an hour. He asked for full medical records from page one to the present, with nothing being left out. He would review these records and would try to help us. He did say this might be a complicated case from what I had told him. I asked if we could bring Paul to him and he said that without having seen Paul, he could not advise us in this way. He said that possibly if Paul were to be brought by air ambulance, it would be a safer way. He said he would review the records and then proceed from there. When I got off the phone, Kelly, my sister Bev and Jon were all waiting to hear the news. I realized that Paul had to be fed and given medicine, as it was pretty late in the evening. Jon said he would take care of Paul and Bev asked him, "Don't you want to hear the news?" As he was walking into the kitchen, he called back and said, "I'll read about it in the blog!" All of us were very excited about the possiblity that we would have someone who could help us over this hill. There are over 2000 pages of medical notes and 6 CD's of images for Dr. Ghaly to review. I pray he will find the 'needle in the haystack'. Kelly will be taking all of this to him on Friday when she gets home. He is in the next town over from her home.

Paul will have the staples removed today from the last surgery. We are going to see if we can get an opinion whether Paul can travel safely by car. We would take 2 days to get to Chicago, taking hour breaks every couple of hours. If that is possible, that will be the way we get Paul to Chicago when the time comes. If not, we are checking out a number of sources for transporting him by air ambulance. Please pray we will do the right thing for Paul.

Paul seems to be slowly improving in his ability to get up. He has been on a couple of walks each day, albeit short ones. He got up the other night when Richard Watson came by to visit. He didn't at first, but after about an hour, he heard all the laughter and talking downstairs, and he agreed to come down. He sat up for awhile and even ate some food.

On Wednesday morning, before I went to work, I wanted to check on Paul. I saw he was awake and I asked him if he could tell me what day it was. He closed his eyes and said no. I asked him to try harder and to at least give me a guess. He said "Thursday." I said he was almost right and asked him to try again. He looked over at the clock to see the time (for a frame of reference I would imagine) but the clock was turned away from him. He said he didn't know and I asked him to please try to guess. He looked right at me and said, "I could start with Monday, then Tuesday, Wednesday, obviously not Thursday, Friday and Saturday. Is that what you want?" I laughed and said his response was much better than a guess and then said, "Welcome back Paul". His response was so 'Paul'. He has been pretty irritable this past week. The new medicine has that side affect - but it could be that as he recovers he is just trying to deal with the pain. Kelly said she remembers he went through this once before, as she remembered reading it in the blog.

I have to let you know, I get calls from Jon so often after he reads the blog and he will ask if I have seen the comments. He will tell me how many comments there are and will wait until I read them too while we are on the phone. With all the complaints about the horrible things you can come across on the internet.......................it has been a blessing to our family. It is a wonderful tool for everyone to share their faith and love!!

To all of our 'bloggers in Christ', peace to you in this day.
Love,
Jon and Rebecca Fidero

Nowhere Man

We are now in a state of total confusion concerning Paul's surgery and the resulting complications. When we took Paul to the ER to try to figure out what to do about the fever, they also took a CT scan to make sure the shunt had not over drained the ventricles. One good thing is that the fever finally broke and Paul is at least sleeping a little better. The CT scan showed that the ventricles are a bit larger than when he had the shunt replaced and we were referred back to the neurosurgeon who did the surgery. Hydrocephalus is still our main problem according to the ER doctor. We called the neurosurgeon yesterday morning and asked that we be able to speak to him as soon as possible. He called yesterday afternoon and told us that he has no idea why Paul has such severe headaches, or the issue of incontinence and the inability to swallow liquids very easily. He referred us to the neurologist who first recommended us to this neurosurgeon. We had talked previously to the neurologist and he said he is not a surgeon and does not deal at all with the use or problems of hydrocephalus and shunts. The ER physician told us to make sure to get our neurosurgeon involved because there was a problem with the shunt and the complications needed to be addressed. But he can't help us and the very first neurosurgeon won't help us because he didn't put in the new shunt. (That is very understandable.)

My sister in law, Kelly, is coming in to town today to help James take care of Paul, since he requires more care than prior to the surgery. She will also help me do some phone calling to see if we can find someone to help us with this vicious cycle we have going.

I sat up last night at 3 AM, on the side of Paul's bed and found peace in just having a real one on one with God. I experienced moments of sheer panic and frustration yesterday, along with saddness as I looked at Paul laying so helplessly, as he waits for us to help him. The long roller coaster ride yesterday left me drained. Prayer is what sustains me throughout. I can't help but keep repeating the name of Jesus. I smiled as I pictured a saint in heaven answering the 'red phone' and then saying to Jesus, "Fidero's on line one again." Jesus responds by sending people to my aid. My sister and brother in law came last night and we sat on the front porch and I was able to laugh a lot. It felt so good. Sitting in the rocking chairs had a very soothing effect. For those of you who know me, yes, I was rocking at a faster rate than the others.......smile. Great tension reliever, those rockers. My brother called and said he was sending Kelly on the next available flight to come help us also. The people at work were so supportive yesterday while I was at work, coming over to make sure I was okay. They knew what was going on with us and wanted to let me know they were praying.

I had to leave the office so that I could go to the 2 different hospitals to get all the medical records so that we can possibly find someone who can at least assess what is going on and guide us. We need a medical professional to answer our questions since this is...............well, brain surgery! I have done some research on this problem and know a little bit, but not enough to ask the right questions. We are just trying to get an understanding of why no one seems to want to help us. It is beyond my comprehension that this scenario could actually exist. Today we are looking for people who can help us find solutions. Please pray for our guidance. Pray for Paul to be relieved of his pain according to God's will.

In an effort to keep Paul from losing too much physically, we were able to get him to take 4 walks yesterday. They were short walks down the street and on one of them, our dog Abby was running down the street with James. She seemed so happy to be out and running with all of us in tow and Paul actually commented on how awesome his dog was and he smiled. He didn't really say anything else. He only speaks when he prays or when he talks about his dog.

Let's hope and pray for a day really soon that we can share some really positive news with you. Thank you for staying with us on this long haul. You don't know how often I draw strength from all your prayers and comments. You have shown yourselves to be 'faithful servants of God' in your loving, prayerful support. May God bless you with great graces.

Peace to all of you in Jesus Christ,
Jon and Rebecca

Helplessly Hoping

After speaking to the doctor on Friday afternoon, I was left with the most helpless feeling. He said he had no idea why Paul was running a fever and we should maybe try to get him up and walking around as much as possible, as the lungs might be the problem. The general anesthesia might have affected the lungs and if Paul was taking shallow breaths, he would develop pneumonia. Getting him up and moving would help alleviate that problem. That was not the only problem I was concerned with following this shunt replacement. Paul has basically stopped talking except when asked direct questions. He will nod or point or use sign language to answer and we have to tell him to respond in words. He has not been eating food and is back to food being given through the feeding tube. His head hurts so bad he doesn't want to chew or put out any effort to eat. Another concern is that we have to make sure he is taken to the restroom as he doesn't get up on his own ever since this last surgery. That was never a problem after any of the other surgeries. He is still aware of his surroundings, but for the first time in a long time, he did not know what day it was. He has to think for a longer period of time before he can answer other basic questions. When I mentioned all this to the doctor he said he has no idea why any of this has happened. He said we would just wait for some time and see what develops. I was most uncomfortable with this response since we were still dealing with a fever and no reason, along with the pressure in Paul's head affecting his ability to function to a much lesser degree. If the doctor who performed the surgery could not answer these questions or address complications after the very work he had done...........who could? I was numb with fatigue and overwhelmed with the unknown of our predicament.

I received a call from our friend whose son also suffered a brain injury almost 2 years ago. She understood our frustration and said she has gone through so much of the same problems in finding someone who was actually able to solve some of their more difficult issues that developed as a result of the brain injury. Her son's problems are different than Paul's but she was able to truly empathize and it helped to share what we were going through. She said that she was going to call Monsignor Reynolds. He had prayed over her son and she truly believed it helped with her son's healing. There is a bit of a connection with Monsignor Reynolds and our family. He was at the same hospital as my dad and both had cancer. We knew my dad was going to die in the days ahead and our whole family was gathered at the hospital on Good Friday 2002. I was standing out in the waiting room and saw Archbishop Donahue walk to the elevators. I immediately thought of asking him to come bless my dad. He graciously came to the room and with all of the family standing around my dad's bed, he blessed him and reassured my dad that he would be praying for him by name at the 3:00 service that afternoon. He told us he was at the hospital to see Monsignor Reynolds, who also was in critical condition with cancer. I assumed that Monsignor Reynolds would also die from cancer. I learned that he was healed and that he now has the gift of healing. I was relieved to know that Dee would call him and ask if he would pray over Paul.

After talking to Dee, I felt some renewal in spirit and remembered we had not said the family rosary, so gathered everyone in Paul's room and we said the rosary. It was during that time that we received a return call from Monsignor Reynolds! It was after 10 PM when we finished, so I returned the call Saturday morning. The arrangements were made to meet at St. Brigid's after he finished with the 9:00 AM Mass. Later in the day I realized what day Sunday was. It was the 7th month anniversary of Paul's accident - 6/11. It was also the Feast of Most Holy Trinity. It was also the day that I was scheduled to be in adoration at 4 PM. I was really looking forward to the quiet of that hour! I had peace just thinking about what Sunday would bring.

While everyone went to the 8:30 Mass, I got Paul ready at a slow pace. He was still running a fever. I decided that he would be running a fever while in bed or riding in the car and I felt the best medicine would be for him to be prayed over. I have to interject something here. Paul has not been talking and can hardly get up to go to the bathroom. There is one constant with him. He speaks when he prays during the night when the pain is too intense. He quietly prays for help, then says that he loves God and will wait. This is what wakes me each night. I know that it must be time for medication. It has amazed me that Paul will speak out loud when praying and that he continues with such patience and endurance. I am crumbling and it is he who is bearing the pain. I hear his prayers and it renews in me the ability to persevere. Also, on Sunday morning I told Jon to let Paul sleep for awhile longer and I would go to a later Mass. I knew Paul didn't have the energy to go to Mass (not with a fever) and go out to St. Brigid's, which is about 45 minutes away. Paul must have woken and realized everyone was getting ready for Mass. I was in my room and heard James say something to Paul about finding slacks for Paul to wear. When I came into the room, Paul was standing at his closet and I asked what he was doing. He said he needed to find his clothes for church. I asked him if he felt he could make it and he turned around and said, " Actually, I need to lay down quickly." I reassured him that his dad would bring him Communion and it would be better if he stayed home. He doesn't get up to eat or use the restroom, but did get up in his effort to go to church. It is when I think about these things specifically that I cry easily. The simple beauty of his faith touchs my heart so deeply. I have learned so much from my son and I thank God for all that has been shown through Paul.

As we drove to St. Brigid's we prayed the rosary for Paul and for Monsignor Reynolds. We were very pleased to meet Monsignor and he was so welcoming. He took time to learn what Paul had been through and then prayed for Paul's healing and our discernment as we looked for guidance in finding those who could solve the problems we were encountering. He shared his story of recovery and said he has full faith Paul will recover from this. He told us that we needed to have full faith in this also. He believes strongly that faith brings such beneficial healing. He said that a doctor told him that in his practice, he has found that those who have a faith and the support of prayerful family and friends, recover more often. Of course...........we already knew that one!!!! Smile. It is why we stay the course. Sunday morning, I lit for the first time, a candle that has the word HOPE on it, as we prayed before giving Paul Communion. Then I read today's readings. When I read " See, the eyes of the Lord are upon those who fear him, upon those who hope for his kindness" I smiled........ Keep the HOPE alive. While we are tired and worn down somewhat, our hope is alive and the Light of Christ is leading us.

James and I went to Adoration together and I found the peace I needed. I rememberd how Jon and I had come to this chapel at 1 AM in the first 2 weeks followiing Paul's accident and how much hope we had at that time! I then went to Mass and came home ready to deal with what was at hand. Paul was still running a fever, so we prepared to go to the ER. He fell asleep very soundly while we were getting ready, so we let him sleep. We left around 2 AM, knowing that there would not be a long wait at this hour.
We are waiting for results of tests and will go from there. Funny thing - Paul's fever seems to have broken. I pray it is really the case. There is still the issue of his deteriorating mental capability after this last surgery. We are waiting for the results of the CT scan.

I will update the blog later today when we will know for sure what is going to happen. Keep us in your prayers that we will have the understanding and knowledge to make the best decisions for Paul. It saddens me to see that after 3 1/2 months we still don't have a solution to the hydrocephalus. We are back to square one. But I got an email about a Vietnam veteran who died this past week and learned he had been a prisoner of war for 5 years. I thought about the years he spent alone and abused, without family or friends. No support system or any knowledge of how his family was doing. The same thiing with his family - not knowing the condition of their husband, son, brother, dad. The pain and agony of that wait makes our 'walk' pale in comparison.

God bless all of you and your intentions are ours.
Love,
Jon and Rebecca

Last, But Not Least

These are the other pictures I was not able to post last week. Paul and Geneva, as they were leavng church and then the family picture after Mass (Michael, Uncle Joe, Me, Jon, Paul, Bev and Geneva. Sunday was about the best day ever since the accident! I look forward to the day when Paul can join us at a daily 6:30 AM Mass!!!

We Came, We Saw, We Left

Finally, the blog is up and running!

This whole week has been a tough one for us. With the surgery and then the complication last night, we are absolutely fatigued. We were up at 5 AM Monday to get Paul to his pre-op appointment and had stayed up later than we probably should have on Sunday. On Monday, Jonathan Tarantino came by in the evening to see Paul before he had surgery. Paul was already in bed since his head was hurting and he had had such a bg day. I apologized to Jonathan that Paul didn't have much energy left to visit. Also, when Jonathan came, we were just getting ready to pray the rosary as a family, for a successful surgery. I told Jonathan that's what we were about to do and he said it was not a problem, and he pulled his rosary out of his pocket! I was so glad he would be joining us. Tuesday we were up at 4:30 and each of us pulled a shift at the hospital so Paul would not be alone. Jon took the day off, and I spent the night then. James came in the morning and stayed until Paul ws released around 3:30 PM. I met them at home to help get Paul settled in.

I remembered the nurse saying early in the morning on Wednesday that Paul was running a fever. This is common after surgery. When the resident neurosurgeon came by he said that Paul could go home Wednesday or if we felt more comfortable, he could stay until Thursday. Unfortunately, I was not at the hospital when they came in to discharge Paul, and James assumed this was all okay. I probably would have opted for one more day. With the knowledge that Paul had been running a fever, I started to check it as soon as he got home. He normally is around 97.9 degrees and the first temperature I got for him was 98.5. I knew this was a bit elevated for him, but it was not a big deal. He did not eat dinner, just slept most of the afternoon/evening away. I figured he needed to sleep because there was a new wing to the hospital being built...........right outside Paul's window. There was so much noise with that and then all the interruptions by nurses and techs throughout the day. He had to be tired! I know I was exhausted because of the noise during the night. So I left him sleeping and just fed him through the feeding tube. He didn't wake once while I got him food and water. At about 9:00 PM, I took his temperature and it was at 101.4. This increase in temperature really surprised me. A few minutes later I checked it again and it was 101.5. I looked at Jon and he said, "Let's go." We had learned from previous times that a temperature over 100 degrees needs to be taken seriously because of the brain injury. We packed up and drove to the hospital. They ran a number of tests to see if he had an infection anywhere. His incisions all looked normal, so it was not with that. They told us that it would take hours before they would have results and the neurosurgeons on staff were in an emergency surgery and they would want to see Paul. We decided that both Jon and I should not wait at the hospital all night, one of us needed to be ready for the next 'tour of duty'. Since the van was parked far away in a parking deck on the campus (it is a university hospital), I told Jon to go on home, just send James in the morning to relieve me. I figured I could rest my head on Paul's bed and get a bit of sleep. A nurse was very kind and brought me a pillow and blanket. I raised Paul's bed and let my head rest on the bottom of the bed. I actually got a bit of sleep, but again, there were disruptions and the ER was pretty much packed, so there was a lot of noise out in the hallway. At 3:00 AM they said that all tests showed negative results, there was no infection and that the temperature was possibly due to the fact that Paul was not up as much as they would lke to see. It helps the lungs to expand more and take in more air. This helps the body control the temperature. I fully expected they would be admitting Paul when I told Jon to go on home. I called him to come back to get us and by 4 AM we were home and in bed.

Yesterday was a little better for Paul. James was able to get him on a walk and had him up and downstairs in the afternoon. We made his favortie dinner - grilled steak - and he ate well. His temperature stayed down for most of the day, but last night it was back up over 100 again. I will be back in touch with the doctor today. Paul seems almost as bad as before he had any surgeries. He is not talking, but is using hand signals, he is very lethargic and his headache remains at a level 7 even with pain medication. I feel so totally helpless about it all. My prayers are without ceasing as I live through each minute and watch this all with basically a feeling of emptiness. I do not believe in any way that we are alone in this, but I feel such a void right now. It is so hard to know what is the right answer with anyone in the medical profession anymore. Each person we talk to has a different slant or reason for things, but I basically feel we get answers 'off the cuff' rather than anything based on true knowledge. I can only start each day and ask that I do God's will and that Paul will be relieved of his pain. I thank God that I have been given another day and hope that I will be brought to greater holiness along with my family. And so begins this day.

One thing that had me very happy last week was that Paul remembered and used a couple of words from before the accident. I came into his room and asked him how he was and he said, "'Meh". I laughed out loud and then hugged him as I said how happy I was to hear him use a word he always used before when he wasn't feeling so great. He didn't quite understand what all the excitement was about, especially since all he said was "Meh". Later that day, after he tried to explain something to me he asked, "Saavy?" That is from the movie 'Pirates of the Caribbean", which our family has seen and has quoted lines from it numerous times. Again, I hugged him and said that he had not said that word in a very long time and I asked if he remembered where that word came from. He said simply, "Pirates". It was comforting to hear him use some of his old sayings. In so many ways he has changed and cognitively, he has a long road ahead. But I believe that we will see more and more of 'Our Paul' as he recovers.

We ask that you keep us in your prayers for the strength to cope with what comes each day. As with everyone, some days are very difficult to get through with our faith, hope and trust intact!
"Come Holy Spirit, come by means of the powerful intercession of Immaculate Heart of Mary, your well beloved spouse."

Peace in our Lord Jesus Christ,
Jon and Rebecca

Wednesday night....Prayers are needed

At the request of Rebecca, I am posting this blog. She has been having problems with the blog for the past several days. She had typed up this evening's update, tried to post it and lost the entire thing. So I am helping her get an update posted as she is now busy taking Paul back to the hospital.

Paul was released at 4:00 PM today. However, he is now on his way back to the hospital this evening with a 102 fever. Rebecca is not sure why he is running the fever or why he was sent home at all since he was running a fever this morning. Since she was not at the hospital when the decision was made to release him, she has no answers to these questions. Rebecca is requesting prayers so that they can find out what is causing the fever and get Paul back home as soon as possible.

Rebecca will update the blog tomorrow once she leaves the hospital. She will be spending the night there with Paul. The hospital does not have internet access and cell phone calls don't seem to get through.

Surgery Update

This site has had problems all day and I have had a very hard time getting into it. I am so sorry for the delay.

Paul had to have a complete replacement of the shunt system. It means a bit longer recovery unfortunately. There is no internet connection or cell phone connection at this hospital, so it has been hard to reach Jon. He said that Paul had a headache when he woke, but who knows if that is surgery related or pressure. Time will tell.
Jon stayed with Paul all day and I will take the night shift. James will be with Paul tomorrow. It would be wonderful if they released Paul tomorrow, but I don't think that will happen due to there being 4 incisions again. If I don't learn patience through all this - I will definitely be a hopeless cause!!

James, Michael and I got to attend Mass this morning. So many people continue to pray for us and I could not thank everyone enough for this. It was so peaceful this morning, with a fresh and crisp breeze blowing. I know the Holy Spirit is moving within us and that we are moving along by the grace of God. While I was disappointed to learn it was a full revision, I hold onto the fact that we are one day closer to the recovery Paul is supposed to have. Praise be to God.

Paul is scheduled for rehabilitation starting 6/26. Plese pray this surgery will be sucessful so that Paul can participate fully in his rehabilitation. There is a lot of ground to cover.

I will try to post the last few pictures we took this weekend. The system shut down as I was uploading them - a bit frustrating, to be sure! I should have more details to post tomorrow after our 'shift change'........smile.

Peace to all of you,
Love,
Jon and Rebecca

Weekend Pictures

Paul's visit to DTSi






James, Uncle Mike, Paul and Aunt Mary Beth







Lunch with Aunt Mary Beth, Aunt Bev, James, James and Mike





I have tried to get the pictures on the site, but there are still problems with it. I will continue to try to post the pictures throughout the day.

I have spoken to Jon and he said that Paul is still in surgery at this time. They have to check all 3 sections of the shunt to see where it is malfunctioning and we are praying that the whole thing does not need replacing, as that means Paul will have 4 incisions down to his stomach again.
Please pray for the doctors and nurses as they work today, and for a successful outcome. May God's will be done in all of this.

God bless,
Jon and Rebecca

p.s. I will also have James try to get the pictures up on the site. It could be operator error..............stranger things have happened! Smile.

Good Vibrations (continued)

Mike and Paul coming back from visiting with Bob










It was a terrific weekend for Paul, filled with activity and laughter. My sister, Mary Beth and Mike and their son, James, left on Friday to drive home to Michigan. As it was First Friday, we went to Mass together before they left. After Mass, I was talking to a friend and Paul leaned over and asked who the woman was that was standing near by. I told him and he said, "That's right, I know her now." He walked over to her and started a conversation! Then he came back over to me and asked, "Who are those girls over there?" I told him they were the sisters of a young man that Paul would go to Mass with when he was at Georgia State University. He said, "I remember now." He walked over to them and struck up a conversation with them. It was great to see him intiate the conversations so comfortably. I was able to visit with friends for quite awhile, since Paul was not telling me it was time to go because his head hurt, which is how it has been all along. When he was finished with his visit, we left. After my sister and family left, Paul was still feeling well, so I asked him if he wanted to go do something. He said he couldn't think of anything, so I suggested we go surprise his co-workers at DTSi. He agreed it would be fun to see them. We went there and it really was a surprise for them. Paul went back to his office and surprised Lisa Hanrahan and then checked out his computer. He immediately asked who added all the icons to his desktop! He knew it had changed! Richard Watson was not in the office, but had called in, so Paul talked to him also.

Afterward, we went home for lunch. We went on a couple of walks in the afternoon, but then settled in for a quiet evening. On Saturday, Paul came outside while we were working on the deck. He had called Geneva (who he had been dating before his accident) and he wanted to know if it would be alright if she went to Mass with us at 8:30 AM Sunday. Once again, Paul was initiating contact with other people. I don't know if you remember that we were told by the therapists at Shepherd Center that memory and initiation were severely affected and that Paul would have a hard time recovering in these areas. Paul is ever so slowly showing signs of improvement! Also, on Saturday, his friend Brendan called and I heard Paul tell him that unfortunately he doesn't remember the last 6 months of his life, but the last 3 weeks he can remember. And for the most part, that is very true. He has asked questions about people he has seen or activities, because he is remembering them. One thing he does do and that is repeat himself. Especially when he wants to thank someone or tell us he is sorry for all that we are going through because of him. I don't believe he remembers he has told us as often as he has. But there is definite improvement in his ability to remember things from a couple of weeks ago.

The main event of the weekend came on Saturday afternoon. Jon and I wanted to go to church for the sacrament of Reconciliation. I told Paul we were going and it was a pleasant day, so if he wanted to sit in the car, he would be comfortable. He said that he would come in with us. I told him that that would be a better idea anyway. We walked in and there was a fairly long line. I immediately had a thought that Paul would not want to sit that long while he waited for us. The big surprise was when he said he actually wanted to go to confession also! I made sure we heard him correctly and then told him he could sit until it was his turn. Well, God in His infinite goodness provided an easy solution. The man who was first in line was a friend of ours and he motioned to Paul to come stand in front of him, so that Paul would not have to wait so long. Jon walked Paul to the front of the line and Paul was able to go to Reconciliation almost right away. There were 2 priests hearing confessions, so I went to the other line and when Paul was done, he sat and waited for Jon and I. We prayed together for a little while after we were all done and then left. I asked Paul how it went and he said, "It went fine. I really wanted to tell God I was sorry for any sins, even the ones I can't remember." Jon and I smiled and I know we were feeling the same thing - what an incredible blessing that was for all of us. It was absolutely just an awesome afteroon.

We tried to use the eyelid weight that was reordered. It still did not work, but in an effort to make it work, I found a new way to keep Paul's eyelid closed. I used 3 very thin strips of light weight bandaging tape to hold Paul's eyelid down. It worked really well and Paul was finally able to wear his sunglasses without the big patch over his eye. It was so much more comfortable for him. He was so excited about it that he told me to stop the next door neighbors (Ron and Connie) who were driving away. He wanted them to see that he did not have to wear his patch anymore. Jon ran out to the street and stopped them, and Paul walked out and shared his good news. Then he wanted to take a walk, so we walked over to another neighbor (Bob)who was outside and Paul told him about it too. We sat outside with Bob and his wife for awhile, then headed home for lunch.

It was late Saturday night, around 10:30 PM and Paul got out of bed and told me that since we would be rushed in the morning, he wanted to pick out his clothes for Mass. I was happy that he was showing more initiative, so I gladly got out of bed to help him with this little project. He picked out what he wanted to wear, tried the pants on to make sure they weren't too big, then went back to bed. I know he wanted to look nice for Geneva. He had not shown this much interest before!

Sunday morning came too early for me! We were all very tired. We went to Mass and joined my sister Bev and her husband Joe. After Mass, we took pictures and visited with so many people. Usually we leave right away because Paul is so uncomfortable. If he was at that point, he did not tell us. I know he was putting out a huge effort because Geneva was with him. We had breakfast and a little later, Geneva had to leave. Paul really enjoyed his visit with her and said he really wants to get better so he can maybe go visit her in Florida.

In the afternoon, Brendan came to pick up Paul to take him to the movies. Paul really wanted to see X-Men, which is what they saw. After the movie, he called me to see what was for dinner and to let me know they were on their way home. I told him we were having vegetable lasagna and from his tone of voice, knew it was not what he had in mind. He said okay, then hung up. I smiled and told Jon that I would not be surprised if he called back to say that Brendan was going to take him to Wendy's for a hamburger. I got the phone call 2 minutes later and Paul asked if it would be okay if he ate at the Hanrahans house, since they were ordering food from Outback Steakhouse. I laughed and told Paul that sounded like a much better deal! Jon and I had a 4 1/2 hour break, so we took full advantage of it and continued with the job of getting the deck stained.

Our nine day novena to the Holy Spirit ended on Pentecost Sunday and we truly were graced with the workings of the Holy Spirit. We remain so hopeful about Paul getting relief from his headaches with the surgery tomorrow morning and our prayer, "Come Holy Spirit, come by means of the powerful intercession of the Immaculate Heart of Mary, Your well beloved spouse" will continue to be on our lips.
Jon will be with Paul tomorrow, while James, Michael and I go to the 6:30 AM Mass. We will include the intentions of all of you who have prayed and continue to pray for our family.

Come Holy Spirit, renew the face of the earth.
Love,
Jon and Rebecca Fidero

Good Vibrations

There was a problem with getting into the site this morning and I am also back at work full time, so my Weekend Update will be posted later this evening with pictures too! It was a terrific weekend, and surely the Holy Spirit was at work.

Please remember Paul in your prayers that his surgery at 6 AM will be successful tomorrow morning. Thank you so much for your help! May the Holy Spirit guide the hands of the surgeon on Tuesday, in the first week of PENTECOST!

God bless all of you,
Love,
Jon and Rebecca

The Visitation

As we presumed, the shunt has not been working almost since it was put in. The new neurologist said that the ventricles have not changed much since Paul was first diagnosed with hydrocephalus. This doctor spent time with us explaining what needs to be done and that is to take each section to see where there is blockage and then replace that part of the shunt. The tube going into the stomach or the tube going into the ventricle might have become blocked or the shunt itself is not working. Paul is scheduled for a 7:00 AM surgery Tuesday morning at Emory Hospital. We ask that you pray for the medical staff that will do the surgery and for Paul to be relieved of his headaches. The neurosurgeon said that Paul's headaches may not be totally relieved if part of the problem is a case of post traumatic headache, which is somewhat common after a severe head injury such as Paul had. We obviously need to address the issue of hydrocephalus, then when they know for sure the shunt is working properly, we will see if Paul will still suffer from headaches for other reasons. He did not have headaches in the months following his head injury, so we will pray that it is due to hydrocephalus.

Tuesday was very hot and with the bright sun, Paul didn't want to go for an afternoon walk. I asked him if he would consider going to St. Stephens and we could walk once around the sanctuary and pray as we walked. He said he would do that. I had work to do, and it was not until 7 PM that Jon, Paul, James, Abby dog and I went to the church. James walked Abby outside while we went into the church. No one was there so we started to walk around the perimeter of the sanctuary. Paul stopped in front of the tabernacle when we got to the front of the church and he needed help to kneel down. It was more of a sitting position, but he looked up at the tabernacle and started to pray out loud to Jesus. He thanked Jesus for saving his life and for his family. He then asked that if the pain could be removed he would appreciate it, but if not, he would wait. This has been his prayer all along. We all said some prayers together, then helped Paul get back up and he walked around the sanctuary 2 more times. We lit a candle in front of the pictures of the Blessed Mother and St. Joseph also. I was able to enjoy a wonderful 'pocket of peace' as we passed one of the windows in the church and we saw James out on the lawn with Abby. Abby was laying on the grass, panting after her run and James was doing cartwheels over her! My spirit felt so light and joyful as I watched James! Jon, Paul and I enjoyed the moment immensely.

When we got back outside, James said he had spoken to my sister, Mary Beth. She had called me earlier and said that she was on her way home from Topsail Island (and returning to Plymouth, MI) and could swing down to Atlanta and pick up Paul if we needed her to. We were considering taking him to a doctor in Michigan that we have really wanted him to see. After we thought about it, we asked James to see if he could reach his aunt while we were in church and tell her we were really wanting to do that. She was in the mountains so it would be hard to reach her. As soon as we got back outside, he told us she was on her way and would be there the next morning. (Probably the reason he was doing cartwheels!)

We planned on leaving after the morning appointment. After our appointment and the conversation we had with the neurosurgeon, we agreed with him about the need for surgery. Mary Beth was at the house when we got home. We discussed all the options and finally decided that it just wasn't in Paul's best interest to make a quick trip to Michigan and he really needs to be stabilized before he goes anywhere. Mary Beth said that she was still glad she came. I was even happier. I have really missed her! Also, she had James, my little nephew with her. It has been so good to hear a child laughing in the house again.

Interestingly, yesterday was the Feast of the Visitation of our Blessed Mother Mary to her cousin Elizabeth (mother of St. John the Baptist). On this feast day, my sister Mary Elizabeth came to visit us!! In the afternoon, Paul asked if we could walk at St. Stephens again. Mary Beth and I drove over with Paul and we went into the sanctuary. No one was in there, so we started to walk to the front. Paul stopped and said, "Start at number one." I followed the direction of his gaze and he was looking at the First Station of the Cross. We walked to the side of the church and he stopped right below the station - JESUS IS CONDEMNED. He read it out loud and then stood staring at it. He moved to the Second Station of the Cross, JESUS TAKES HIS CROSS and repeated what he had just done. At the Third Station of the Cross, JESUS FALLS THE FIRST TIME, Paul prayed out loud and told Jesus how sorry he was for his sinfulness and that it was his sins that put Jesus on the cross. He said that he knows he will sin again in his life, but that he will try so much harder not to, because he knows what his sins do to Jesus. He stood there staring at the sculpture, which shows Jesus on the ground. Then he moved on. The Fourth Station is JESUS MEETS HIS MOTHER. Paul stood for a moment and then turned to me and hugged me. Then he hugged Aunt Mary Beth. (That would be appropriate as my 2 sisters are just like mothers to my sons.) He prayed out loud at the 7th and 9th station, which are the second and third falls of Jesus. At these times of prayer, it was clearly a moment between just Paul and Jesus. Paul seemed totally unaware of our presence as he looked at Jesus in these sculptures and spoke to Jesus. I did not speak, but just watched this intimacy shared between my son and Blessed Mary's son and prayed I would be gifted with the same grace. There was complete serenity for me as we walked the 14 Stations of the Cross, because I knew Jesus was walking with Paul. When we finished, Paul stopped in front of the Tabernacle and again asked for help to kneel down. He thanked Jesus again for having spared his life and for Jesus giving His. He thanked Him for his family and told Him that he will try hard not to be so sinful. There is a large tapestry of the Holy Spirit over the altar and we prayed that we would be graced with the gifts of the Holy Spirit. Then we got up and walked around the perimeter one more time, stopping to say a Hail Mary in front of the picture of Mary, Mother of Perpetual Help.

Mary Beth and I both spoke of how it was so evident that Paul was having a very personal conversation with Jesus. The tone of voice and the intent look on Paul's face left no doubt in our mind. We found joy in the fact that this feast day was shared so beautifully together in prayer. Later that evening, Bev, Joe, Courtney,Mary Beth and James joined our family, where we had dinner on the deck. It has been a long time since we had a big dinner together with so much family present.

We ended the day as we prayed the 5th day of the Novena to the Holy Spirit.
A perfect ending to the Feast of the Visitation.
Praise be to God, our loving Father in heaven.

Love,
Jon and Rebecca