Yesterday Dad was very alert. On each visit we noticed that he has made tremendous improvements with mouth movements. We are able to understand him much easier than before. We still have trouble understand words but he has improved. Mom, Rod and I continued to service him with leg, feet, back and head rubs. He is looking like Dad again.
Today (Thursday Feb 1st) was my last day with Dad as I am on my way back home (Thank you Uncle Benny!). As you can image it is extremely difficult to leave. I am really not sure if I can articulate my feelings except saying that I love my Dad. I have been here since the beginning and have watched him transition to where he is now. Those of you who have not been here and seen Dad and spend time with Mom you will never truely understand the impact it can have on you emotionally, physically and spiritually. I do not wish this situation for anyone but I am glad that I had the opportunity to be with Mom and Dad during this time. I have learned a lot about myself, about Mom, the strength of Dad, medicine, faith, and willingness of people to serve with a true servants heart. It has honestly changed my life. Our family is strong. Strong in faith, strong in love and strong in hope. I thank all of you who have prayed and supported and who will continue to support us. Ok enough about me...Mom and Rod are in great hands in Port Elizabeth. From the Pastors and members of the church there to nurses/doctors to Hobie Beach where they are currently staying....THANK YOU LYNN FOR EVERYTHING...hi Jimmie. Rod will continue to update the blog... God is love...right Mom!

I apologize for falling behind on my updates. Are days are extremely busy to the point where we do not have time to eat. Its consists of 3 visits per day with commuting to and from the hospital. Also meeting with the people from church as well as Doctors.
Our Sunday began with an incredible service at Ebenezer church. Pastor Neville prayed for Dad in such a way that would have raised Lazarus from the dead…..again. An overwhelming presence of Holy Spirit enveloped the entire congregation. You should have been there.
After our visit on Sunday night we went to pick up Rodney at the airport. Dads condition was the same. He was still drowsy and not communicating very much.
Monday morning I called Dr. Stern and Dr Britz to schedule appointments and receive updates on Dads prognosis. This was a good opportunity to bring Rodney up to speed. After meeting with both Dr’s, they are in agreement that the healing process will be long term. With Guillan Barre, Dad has to re-grow the axyon which is the “copper wire” that runs from the top of the spinal cord to the rest of the body. In a worse case scenerio it could take up to 1 year for it to reach his legs, 7 months to reach arms and hands. After meeting with the Doctors, Mom and I took Rod to see Dad. Dad was more awake than he has been the last couple of days. He was able to give a small smile and then asked for his feet and back to be rubbed. Over the past couple of days he was receiving pain killers as well as a tranquilizer to easy the discomfort of the tracheotomy. They have since discontinued the tranquilizer which now allows him to be more alert. However during the time of sedation he body was still healing. It did not impede his healing process. The afternoon and night visit he was more aware and able to communicate via winks and lip movement. Although he can wink on occasion, move his mouth slightly, and move his thumb on his right hand , its extremely difficult to consistently communicate with Dad as he tends to drift off (sleep)
Today’s visit with Dad was similar to Mondays. Dr. Britz has told us that his improvement has leveled off for now. He has been running a fever the last couple of days which he is taking antibiotics for. We continue to have faith in his recovery process and trust God for a complete healing.

Our Saturday was a busy one. We went to visit Dad in the morning and did the usually exercise with him. He is still taking pain medication that relaxes him so he sleeps the majority of the time we visit with him. After our morning visit mom went to church to pray and I went for my run followed by a dip in the pool. Our afternoon visit was quiet and dad slept while we were there. In the evening our visit was similar to the morning visit. As I have said before and you know that this is going to be a very slow process. It will definitely test our emotional endurance. But he is on his way to recovery. Love you all.

Today was similar to yesterday. Dad is still in a lot of pain so he is sedated. When we visited him in the morning he was sleeping and this afternoon he was sleeping as well. During our morning visit Dad asked me when he would be able to get on a plane. These questions are difficult to answer as we do not want to discourage him. I told him that he would be able to leave the hospital and get on a plane as soon as he was able to breath on his own without assistants from the ventilator. I told him he needs to rest and allow his body to heal and that his body would tell the doctors when he is ready to go home. But that everyone including doctors are impressed with his recovery thus far. He winked at me which means he understood and was ok with what I was telling him.
When we came back for our last visit of the day at night he was more aware but still sedated. His blood pressure was a little high which is a sign of some discomfort. As soon as mom and I walked in he asked for his legs, feet and hands to be rubbed. Visiting hours are over at 8pm. So when it was time for us to leave we told him we would be back tomorrow and he didn’t want us to leave. He asked us if we could stay a little longer so we did. Then he told me to tell the nurse that he could breath on his own. He remembered what I had said earlier in the day about being able to leave the hospital. Then he tried to take a deep breath and starting coughing except when he coughs the air has no where to go and is extremely painful. You can image not only did it hurt him physically but hurt us emotionally to see Dad struggle this way. The encouraging news to all this is that his body continues to heal and this is apparent in his desire to leave the hospital and come home.

Breath of fresh air

Today was a quiet day for us and Dad. I finally was able to talk Mom into going down to the beach to try to relax. We walked but were only able to stay for a half hour because of the schedule we are on. And that was enough as the fervent African sun burnt us.
When we visited Dad this morning he was sleeping. They are now giving him a pain killer that is allowing him to rest easier. Its also acts as a sedative to control muscle spams. And since he has the sensation of pins and needles throughout his body, this provides him with relief. At the same time it makes him very drowsy. So our afternoon visit was the same. Dad was peacefully resting with a minute or two of communication which consisted of him asking me to rub his feet and for mom to scratch his head. When we were speaking with the sister that was watching him today she told us that Dr. Britz was in to visit him. He said that Dad should start breathing on his own soon however that could be two weeks or two months from now, he could not say. Then he told the nurse that he does'nt really know, it could be sooner cause Dad has connections upstairs ( he was pointing up!). News flash……he is already taking breaths on his own. Although they are very light breaths (not enough to sustain the lungs) this is a huge step in the recovery process. On the ventilator we are able to see in number form when he breaths on his own. A healthy lung would show a number of 20 or higher. A couple of days ago he was showing 0. Today his range was between 6 and 8!
During our evening visit Dad asked me when he would be able to leave the hospital. I reminded him again of what syndrome he has contracted and that he is well on his way to recovery. He is aware of where he is but needs a reminder once in a while of his situation. Dad is surrounded by prayers, love and family. My faith continues to grow as I see the power of prayer and its results.

Getting better

Over the last two days Dad seems to be getting stronger. He still has very limited mobility. He can move his right hand, feet, head (side to side) and his wiggle is torso slightly. His left side still remains very weak. All encouraging signs. We have continued to work on our communication. He has been able to mouth certain words. From time to time he will show his frustration if we are not understanding him by rolling his eyes. This too is a good sign. We know he is acting like his old self! He still remains in a lot of pain. Since his nerves are in the recovery stage, he has the sensation of being on pins and needles. So every pain he feels in his body in heightened. He has been having bad migraines the last two days. Dr. Stern seems to think its one of the side effects from the medicine he is taking to reduce the pressure in his stomach. During one of our afternoon visits, Dad asked to have the bed raised so he could be more upright. Another good sign. His blood pressure seems to be in control. According to the charts it has been normal and steady. I have been massaging him 3 times a day and can feel the muscles everywhere begin to move. It is a slow process but each day is a victory. Praise God.

Slowly.............

Today was a good day for Dad. I met with Dr. Britz in the morning and he assured me that Dad was on the upswing to recovery. He said that the stomach pains he has been getting are good signs. The nerves have become agitated and are trying to regain their strength. His movement in his limbs are still the same. Mom and I visit him three times a day. Once in the morning at 11:00am, in the afternoon at 3:00pm and then at 7:00pm. Each time are routine is the same unless he is sleeping. We go in and I start rubbing his legs and feet and moving them. Mom works on his arms and hands. I try to update him on his status and also ask him if he has any questions about his progress. Although its difficult we are able to communicate with him through a series of winks….we are getting pretty good at it. We are encouraged by Dr. Britz update on Dads condition and are firm believers that prayer is moving his progress along.

The New York Football Giants.....the GGGGGGG MEN!

They did it! We are going to the Super Bowl!!!!!!!!!

Transfusion

Today Dad had a blood transfusion. They gave him 2 pints and so far so good. When we saw him in the morning he had lost color due to the amount of blood he lost the night before. He was not responsive in the morning or in the afternoon. After they had completed the transfusion his color returned and the blood tests have improved. They have started a new medicine to help with the spams in his stomach that were causing pain. Because of this medication he is at a more relaxed state and less responsive.
Tonight’s visit we were able to communicate with him a little. He was able to tell me that his stomach hurt and he thought that they were feeding him too much. So I asked the nurse to check and they said that the ventilator was causing him to have gas but causing a feeling of fullness. I continued to work on his legs and feet as Mom rubbed his arms and scratched his head. His blood pressure was steady all day as well as his heart rate. When we said goodnight he was already asleep and comfortable.

Tough Ending

Today started off well. We went to see Dad in the morning and he was looking great. He was trying to communicate with us as usual. He wanted foot rubs and leg exercises. I did those while Mom moved his arms and scratched his head. Through a series of winks, Dad and I are able to communicate well. He asked me about his stomach and what surgery was done. He also asked about his tracheotomy. I tried to fill in all the blanks with him. Just enough so he wouldn't be alarmed. We then left our morning visit and I tried to talked Mom into going for a walk on the beach. She caved. When soon returned for our afternoon visit and he was asleep so we just sat quietly with him. His blood pressure seemed to be on the rise.
During our visit this evening upon entering the room we noticed a large amount of blood around the trachea (throat). The nurses assured us that they would watch it carefully and that his blood thinning medicine was the cause. He had been off it since the surgery but they decided to begin it today. As you can imagine Mom had a difficult time seeing Dad in this condition. Pastor Lionel and Pastor Neville were there to help console Mom as well as a nurse who happens to attend Pastor Neville's church. They explained it to Mom several times to reassure her it would be ok. I spoke with Dr. Stern and he let me know that they would keep a close watch but that the root cause was his medicine. They have stopped the medicine and the blood will begin to clot. During this time Dad was not alert. His blood pressure and heart rate where up and we have learned that this is a sign of discomfort. And its normal. I did read to him a song of Davids in Psalms. He seemed to respond during my reading. Please continue to pray as always but specifically for his blood to clot correctly and his blood pressure to stabilize.

New Peg

Dad had his peg installed into his stomach. Sounds weird almost like he is a car..... but it was successful. He is now going to be able to have important protein directly into his stomach. As I mentioned before because of the paralyses he was unable to hold down food. The peg in his stomach serves him better. They were also able to remove the majority of the protein that was left in his esophagus. Another small little victory. He is still suffering from muscle spams but this is a good thing. It shows the muscle and nerves are trying to recover. Unfortunately it causes a great deal of pain. The lumbar puncture results are back and they are negative. No bacteria in the culture. They will hold on to the culture for 48 hours and test it again. Dr. Britz and the nurses have said he is steadily improving. The movement in his body is still the same. A couple of fingers and toes. He probably could move more but he is being slightly sedated due to his high blood pressure. He had a slight fever today but looked well. He has finished the second round of the antibody. The will not be giving him anymore as 2 is the highest treatment they can give. Now its just a waiting game for the medicine and syndrome to run its course. So we wait and pray.
He is currently on meds to reduce the blood pressure. His average heart per minute is ranging between 88 and 108. Its a little high but they are comfortable with it being at a 100 or less. Today was a quiet day with not a lot of communication due to the sedation. Although in our night visit he communicated with me that his feet hurt and he wanted me to rub them. Then mom asked him if he wanted her to sing to him and he said no! It was awesome. We laughed and he tried to smile and then quickly fell asleep as I rubbed his legs and feet. The church family here continue to support us. They are always calling and checking up on mom and me to make sure we are eating. Tonight we were inviting to Pastor Lionels house for dinner. It was delicious but then again you cant go wrong with rice and chicken. Mom has been feeling tired lately but who can blame her. I have been running in the mornings and have invited her to come with me. Tomorrow morning we are planning for a walk. Maybe some exercise will help relieve the stress she is feeling. My only other option is to sedate her too.....I kid I kid. She is actually doing really well. She too is steadily improving. We have our moments but we have faith and know that there is a plan. She keeps saying God is love and indeed he is. God is love.

Today Dad was suppose to have the "peg" installed so they can feed directly into his stomach. Before they insert the peg they had to clean his esophagus and make sure it was clear of the protein that has formed into a paste. They were not able to get it all. It was more difficult then they had anticipated. Since they were unsuccessful they are going to try again tomorrow. If they are able to clean it all out they will insert the "peg". Since the procedure was painful, he was sedated and we were not able to communicate with him as much as we did yesterday. But I was still able to move his legs for him, massage them and his feet. Still his favorite. Mom and I experienced a lot of challenges today. One was with the receptionist at Dr. Van Dyks (he is performing the gastro surgery "peg") office. I dont want to give all the details of the situation except that my conversation with her was not pleasant. Today was a difficult day for mom and I. Please continue to pray.

Recovery

All the days seem to be running together. This morning started off with a call to the ICU to make sure that they knew he was on a certain heart med. per request of mom who makes a lot of duplicate request...grrr but I called and spoke with a nurse who said that he was very alert today. So after a morning jog and breakfast we made it for visiting hours that start at 11:00am. We usually show up early to sneak an extra hour or two but they kindly asked us not to do that anymore and I kindly responded and told them to pound sand. When we were there he was more alert than he has been. Dad and I were able to communicate via eye winks and eye movements. As you can imagine it is very diffucult to establish since we have never been in this situation before. After many many failed attempts I finally realized he wanted me to rub his legs and feet. This provided him with much relief. So I massaged his legs, feet and then arms and hands. Unfortunately he is experiencing great pain in his chest which has nothing to do with his heart but his lungs. He is getting stomach spams due to the recuperation of his muscles but this is causing a great deal of pain. Enough to bring him to tears. Its hard to watch. After our time in the morning was up we went to visit Dr. Stern who told us that the tracheotomy went well but there were issues with the protein they are feeding him. Since his muscles are paralyzed he is unable to swallow and this has caused a "back up" of protein into his esophagus. They are planning on putting a feeding tube directly into his stomach which they call a peg and they will remove the built up portion of protein in the esophagus. We visited him several more times today and repeated the process of rubbing his legs, feet, arms, and hands. We are getting better with our communication. Again the process and improvement has been extremely slow but he is moving his thumb and hand slightly. As well as both feet..slightly but enough to show improvement. I was able to read the bible to him today which he seemed to enjoy but I think he is definately favoring the foot rubs for now. I love that man. I feel lucky to be here with him and blessed that he is my dad.

Driving on the wrong side of the road and the beach

Dads Hospital

Hobie Beach

Post Tracheotomy

First I must make a correction and say that its Dr. Britz not Fritts. Sorry. He came out of surgery and he looks much better. After surgery Mom and I were able to go and visit with him. Dr. Britz encouraged us to talk with dad...so that was...well it was awesome. I told him that the Giants beat Dallas and he opened his eyes. I said that they played really well and that if they beat Green Bay they will go to the Super Bowl and he raised is eyebrows and tried to smile! The swelling in his body continues to go down. Dr. Stern told us today not to worry about the pneumonia that is very normal in patients who are in ICU and are on ventilators. They keep reminding us that the process is extremely slow. They did a spinal tap today to see if protein is building up which could be contributing to the grogginess. They also did a scan and the scan came back normal and showed no signs of a stroke in the back portion of the neck on the base of the spine. Dr. Britz said that if he suffered a stroke or if there were any abnormalities we would have been able to see them in the scan. He is still unable to breath on his own and his body remains unresponsive. But we know its just temporary. I love you all and will be posting pictures tomorrow.

2:50 pm

I went to the hospital to fill out some papers. When I got to the IC unit, Dad was more aware since they have lowered the sedation. He was able to open his eyes almost all the way. AND I GOT TO TALK TO HIM!!!!! I told him he was doing great and he shook his head no....They is a great sign and the first time he was able to move his head. I told him that everything is going great and he needed to get rest. What an incredible feeling. I asked him if he could blink his eyes once and he did. I said to blink them twice and he did. We are now at the hotel and on our way back to see him before he has the tracheotomy done. KEEP UP THE PRAYERS!!!!

Updates

Date and time : January 12th not sure what time it is.
Location: somewhere over the Atlantic

Today I left Portland Oregon at 7:35am and arrived at Washington D.C. at 3:35pm eastern standard time. My next flight was at 4:40pm headed to Johannesburg, South Africa. My travel thus far has been fairly simple. I have never really blogged before or even kept a running diary of experiences. Considering the circumstances, I thought that this would be a hell of a good time as any.
Please forgive me if my thoughts are scattered or some of my sentences do not make sense or seem out of sequence. But this has been a long day and a stressful week. Enough excuses. As I may have mentioned before I am currently somewhere over the Atlantic Ocean. I have taken a nap, eaten dinner and watched a movie called 310 to Yuma with Russell Crowe. Its decent. I am sitting next to a young boy who name is Danai and was visiting his Auntie in Washington. He is on his summer vacation and will be starting the 4th grade. He was watching Rush Hour 3 and was laughing the entire time. Annoying you ask?? No way. It was refreshing…..I haven’t listen to someone laugh that long since I sang an unintentional solo in church and Kim is probably still laughing. Well my meal is sitting well and that’s a good thing for DanaiJ I am not really sure what time I will be landing in Johannesburg or who is going to pick me up but I am excited to see my mom and be her support. I have never seen my dad in the hospital…never. Partly because I live 3000 miles away and probably because he never went when I was younger and lived home in New York. I am not really sure how I will feel or how I will respond. I probably will take a page out of the old mans book and put my best game face on. Speaking of game face’s I hope the G-Men win this week….I am not really sure if they will televise the game in Port Elizabeth…..I have mixed emotions about that! Damn. Ok….I don’t have anything else to say at this point…..Late -


Date and time: January 13th 5:00pm
Location: Johannesburg

I am now sitting waiting for my next flight which is my connection to Port Elizabeth. My plane ride across the pond is much better described in person. But I will try my best. It was absolutely freezing. Its rare for me to be cold….but it was freezing. I had on a hooded sweatshirt, jacket and a full body blanket and I was still shaking. I am not sure if it was suppose to be that cold or if it was a malfunction of some sort. It was a weird site to see over 100 people with blankets covering from head to toe. I wanted to take a picture but I was too cold to move. To top it off, Danai, the little boy sitting next to me, spilled his soda but just a little on him and the rest of the can on me. I wanted to smack him but then remember that if I hit him I would still be sitting next to him for the next 11 hours…..awkward. So I didn’t. Anyway moving on…Did I mention that I am missing the Giants game today? I really didn’t sleep on the plane….too cold…but I watch 4 movies with a couple of naps in between. I am almost done reading my book Game of Shadows….I am glad cause I am sick of hearing about the steroid scandal in baseball…it was interesting but the media has fanned that flame to many times for me…..I don’t have anything else to say at this point….Late-

Time - 11:00pm
I am at the hotel with mom. Her and one of the pastors were able to pick me up at the airport here in Port Elizabeth. They seem like pleasant people and they reassured me that they have been taking care of her. Its currently raining and humid. Its about 75 degrees. I am exhausted from a long day of traveling. On the way from the airport it was definitely different to sit on the wrong side of the car and drive on the wrong side of the street. That will be challenging. Updates to come. So the hotel….its more like a bungalow. But its comfortable. Mom looks tired. She told me she hasn’t had much sleep…who could blame her. I am excited to see pop tomorrow. Not really sure what I am going to say but I will keep you posted. I will post some pictures tomorrow of the area and mom. Good night.


Date and Time: January 15th 10:50am
Location: Port Elizabeth

When I saw Pop for the first time in the ICU …..I am not sure I can put that moment into words. Mom left me alone so I can be with him. Seeing him with all those tubes coming out of everywhere was overwhelming. I realized how much I depend on him and of course how much he means to me. I love you POP! Its difficult. But I am glad I am here.
Over the last two days I have had an opportunity to meet with Dr. Stern, Dr. Fritts and the another Dr. who is going to perform the tracheotomy. I will try my best to include all the information that I have gathered the last couple of days from the Dr’s.
When I spoke with the neurologist , Dr. Fritts, he told me that Dad’s condition is a 9.5 out of a 10 in severity. There are a couple of concerns. The syndrome has attack the inside of the nerve and not the out which makes the recovery process that more difficult. He has not improved over the last 10 days. He is still not moving and he only opens his eyes enough to see the white part of the eye. They have him sedated to reduce the stress with having the tubes in his mouth from the ventilator. His body is swollen but they say that is common with patients who suffer paralyses but this is only temporary. Dr. Fritts said that Guillain Barre syndrome has a less than 5% mortality rate but its not the syndrome that kills it’s the infections that occur during the recovery. This is why it is important to do the tracheotomy. It will reduce the chances of nasal infections and allow them to move effectively treat the pneumonia. Yes. He has pneumonia but Dr. Stern said that it is common and they should be able to treat it in a couple of days. Dr. Fritts said that we should see some improvement in a couple of weeks and he reminded us that the recovery process is very slow. But that the time frame of recovery before he is able to leave the hospital could be 6 months. He has just completed the first round of treatment and usually at this point patients begin to shows signs of improvement. This is not the case with Dad. They have begun the second part of treatment. They have recommended that we do not try to communicate with him. When mom has tried in the past his blood pressure has gone up…..but this has been happening since they were married. So he does not know that I am here is this is extremely difficult. I want to let him know but I cant. His heart and blood pressure fluctuate a great deal. Dr. Fritts said that is a good sign. It shows that the syndrome has not affected the nerves around the heart. It also has not affect his mind. They are doing another scan today to make sure that this is still the case. The nurse in the ICU have been extremely kind and patient. They move Dad around so that he does not develop bed soars. They do a great deal more but its too long to list. He is under constant supervision. He is scheduled today for a tracheotomy at 4:00pm. The procedure should take about an hour. The Dr. who is performing the procedure had a relative who had the same syndrome and he said that it took about 6 months before they were able to leave the hospital or as they say leave hospital. We know that the recovery is going to be slow and long. Please continue to pray as I know you will. Mom is still having a hard time and does not always listen to what the doctors are really trying to say. Please, please if you have any questions call me. I will fill you in with facts.