Matthew In Germany

Upon entering Matthew’s room today (after waiting a half hour until we could visit), when I saw him I knew it wasn’t a good day. Matthew was still on the respirator and his body covered in iced blankets. His fever was still up, his heart rate high, and his blood pressure low. It is with a broken heart for Matthew and what his body and mind are dealing with that he continues to suffer in the way he is. I am beyond finding the words to express the helpless feeling of a mother to watch her son continue to endure these almost 104 fevers and other complications!  His skin is so very hot, and his face beet red and his forehead just dripping from sweat! Today is day eight of this!!! When you have to leave there is a total feeling of abandoning him to suffer alone!!!

The day got worse!!! The doctor on the floor came in to talk to Dan and I. He spoke English very well. He told us Matthew has two big problems: first he has a clot in his lungs and second his fever is not responding to the antibiotics! (I thought he was going to tell me about the hallucinations and his ability to breathe on his own). They did a test on Matthew today to look down into his lungs (I’m thinking that’s good with the fever still up, his asthma, some pneumonia still, and the question of whether or not he still has fluid in his lungs… it’s good to be safe). He said a specialist came in to evaluate Matthew and felt he probably had this clot elsewhere in his body for a couple of days and in being combative from withdrawing from the ketamine it traveled in his body to his lungs! The doctor said they have increased his heparin (Matthew was on it already as a preventive of clots) in hopes to dissolve the clot and they have changed his antibiotics and put him on one more specific to treat a bladder infection.

A while later the charge doctor of ICU came in to inform me that Matthew’s condition was “unstable/critical,” to see if I understood what was happening to Matthew, and if I had any further questions. They certainly seem to be on top of this and were very supportive. He did say in Matthew’s periods of hallucinations today they were not as severe as yesterday!

Leaving Matthew alone today was absolutely one of the hardest things I have ever had to do! It ranked right up there with last Saturday night having to leave him in violent hallucinations!

Daniel and I left the hospital and went to the Basilica to pray for Matthew and light some candles for him. Mass was just starting and even though we only understood two words, the mass was beautiful and so very needed! We stayed a while and the church was almost empty so we went to light some candles before they locked up. While lighting candles a women came up from behind and handed me a beautiful pray card and quietly walked away (After I thought how beautiful. Even with a language barrier she gave me strength without speaking a word).  I wanted to say the prayer in front of the candles but it was in German. When we came back to the hotel, Daniel, who had an asthma attack in church and a migraine he went online to translate it for me. We said the prayer. How incredible it was to the Blessed Mother in whom I have always trusted… who is my rock. Another message or coincidence?

After hours of the initial shock of this, I heard Matthew, who always felt when ever he had a problem he turned to prayer first for wisdom strength and guidance. Tonight I will learn a lesson and take strength from how Matthew would handle things and use it to pray harder and longer, for God willing tomorrow a better day for Matthew!!!

Matthew went into this coma believing and trusting in God and The Blessed Mother with all his heart that he would return safe! He has extra power up in heaven… don’t lose sight of that (with so many of our dearest family members we have lost within this past year!)

Tonight he is not able to do that for himself so I beg each and every one who reads this to pray hard for Matthew and keep our trust that in the darkest hour we are all holding strong for Matthew!!! I will not allow myself to travel down another road!!! It will be the only way Dan and I will make it through this journey with Matthew and all of us return home with Matthew a new man.

I need to leave you now to go pray for my Matthew. Daniel has been so strong. I don’t know what I would have done without him.

To those of you who have known and followed Matthew’s story for a few years now

(remember when he was in ICU hemorrhaging 1 ½ years ago… what a worry, but  Matthew, Daniel and myself all came back due to the power of prayer. We will this time too!!!)

God Bless all of you and stay strong!

Love to All,

Nancy

Hello To All,

Daniel and I went to visit Matthew today with great anticipation that the worse was behind him and that with the grace of God he would be better today.  Not so!  Upon trying to reduce some of the sedative medications today, Matthew, heart-breakingly, was still experiencing strong hallucinations (but not as intense as the initial wake-up); so he was re-medicated.  When we saw him today, his fever has been almost 104 degrees all day, which is considerably higher than yesterday.  He remains on the respirator and his respirations are labored. Our time today with Matthew was very limited due to the doctors needing to attend to the other patient in the room. God help him also. We were thankful that we had time to say the rosary by Matthew and see him for a while. I know Matthew is still in another world and probably didn’t know that we were even there. I guess it’s a mother thing that I felt I needed to be there!!! It has been five full days since the ketamine has finished. Matthew has required so much work from the nurses and they have worked so hard to meet all of his needs. They have continued to do an incredible job even during Matthew’s most trying episodes!!! God bless them all for their hard work!

The timing of an e-mail I received today gave us such needed strength.  We have posted it below if you wish to read it. If you start to read it, you need to go to the end for the incredible thought and strength it leaves you with!!!  The title of the blog entry is “A Beautiful Message of Support I Received” and the title of the story is “The Perfect Mistake.” Please continue to stay strong in praying for Matthew. He continues to need you more than ever to free his mind of these terrible hallucinations!  Please God bless his mind with peace and tranquility, and thoughts of birds, butterflies, rainbows, flowers, ect. (all the beautiful gifts that God has blessed us with and which Matthew loves so much).  We will continue to hold close to our hearts that Matthew will come through this strong and be blessed with the ultimate gift of a miracle!!! We beg you God.

So we leave you tonight with a sad heart, that Matthew is still enduring his battle.  We love and miss all of you and treasure reading every email we receive.  We have been strengthened and inspired by all of them.  It gives us a great sense of connection and strength.  It truly amazes me, each day when I open my email, people who we have never had the pleasure of meeting, taking the time to reach out to us and send such words of encouragement.  We have been truly blessed.

May God Bless You All Always!

Forever Grateful,

Love,

Nancy

The Perfect Mistake

My Mother’s father worked as a carpenter.. On this particular day, he was building some crates for the clothes his church was sending to orphanages in China. On his way home, he reached into his shirt pocket to find his glasses, but they were gone. When he mentally replayed his earlier actions, he realized what had happened; the glasses had slipped
out of his pocket unnoticed and fallen into one of the crates, which he had nailed
shut.  His brand new glasses were heading for China! The Great Depression was at its height and Grandpa had six children. He had spent $20 for those glasses that very morning. He was upset by the thought of having to buy another pair.

‘It’s not fair,’ he told God as he drove home in frustration.  ‘I’ve been very faithful in giving of my time and money to your work, and now this.

Months later, the director of the orphanage was on furlough in the United States.  He wanted to visit all the churches that supported him in China, so he came to speak one Sunday at my grandfather’s small church in Chicago.  The missionary began by thanking
the people for their faithfulness in supporting the orphanage. ‘But most of all,’ he said, ‘I must thank you for the glasses you sent last year. You see, the Communists had just swept through the orphanage, destroying everything, including my glasses. I was desperate. Even if I had the money, there was simply no way of replacing those glasses. Along with not being able to see well, I experienced headaches every day, so my coworkers and I were much in prayer about this. Then your crates arrived. When my staff removed the covers, they found a pair of glasses lying on top. The missionary paused long enough to let his words sink in. Then, still gripped with the wonder of it all, he
continued: ‘Folks, when I tried on the glasses, it was as though they had been custom made just for me! I want to thank you for being a part of that.’

The people listened, happy for the miraculous glasses. But the missionary surely must have confused their church with another, they thought. There were no glasses on their list of items to be sent overseas.  But sitting quietly in the back, with tears streaming down his face, an ordinary carpenter realized the Master Carpenter had used him in an extraordinary way There are times we want to blame God instead of thanking him!

I have to remember this in these times of trial with my own family. May GOD bless
your week. Look for the perfect mistakes. ‘People are like tea bags- - you have to put them in hot water before you know how strong they are.’

Now ‘ain’t’ that just like God to do something like that????????
Peace is not the absence of trouble.
 Peace is the presence of God.

‘SEE YOURSELF AS GOD SEES YOU.’
You’re God’s Best,
‘YOU ARE A CHILD OF THE MOST HIGH GOD!!’

Hello To All,

Matthew needs everyone to storm heaven with prayers tonight.  Tomorrow the doctors are hoping to try to take him off the respirator and today they started, ever so slowly (which is a good thing), to reduce the sedation medications.  So tomorrow is a very big day for Matthew.  With the grace of God and everyone continuing to pray for him, he will be able to breathe on his own, as he still deals with asthma and some pneumonia.  Again, like with everything else, they are taking things one hour at a time.  For most of our visit with Matthew, he remained sedated.  The doctors are continuing to work on his many complications, but dealing with his lungs and the withdrawal process on the top of their list.

Heartfelt thanks to Jed of mix 102 radio for his tremendous out-pouring of support to Matthew, who has been hourly dedicating a song to Matthew and will continue to do so until he comes home.  That in itself speaks of what an incredible radio station it is, to reach out and be such a source of strength at this time.

It continues to be in high 90s here.  There is no air conditioning in the hospital or hotel, but there is in our little SMART car, God Bless it.  And with 45 miles to the gallon, we took the scenic route back to the hotel.  So we went to the park to get hot dogs for supper, and in asking for a hot dog, this is what we got:

And the only thing I say is: “Where is the bun?”  I did not know what we were eating, but it tasted good.

So once again we turn to all of you to continue praying hard for Matthew, because all prayers are heard and tomorrow will be a big turning point for him.

We saw Melissa today and she looks outstanding.  She is doing so very well and will not be in the hospital too much longer.  Our hearts are full of joy for her and her family.

God Bless You All Always!  We love and miss you all!

Forever Grateful,

Love,

Nancy

Hello To All,

In meeting with Dr. Rohr, Matthew’s doctor, he is truly a pleasure to speak with.  He is not only  brilliant in this incredibly complex field, but he is extremely patient, understanding, and accepting of my many questions.  He is also a gentleman.  He first explained to me the complexity of Matthew’s health and complications, and that we still need to take things one hour at a time.  It is a great challenge to treat so many complications and keep everything else running smoothly.  The cause of the daily increasing fever (for the past 7 days) was determined and treatment started this morning.  The doctor is going to continue to keep Matthew heavily sedated to give his body a desperately needed rest, in hopes that after another few days they will try to start waking him up again and with the grace of God this time around will be much easier for Matthew.  The past two days were an additional great toll on his body.  A big problem is that the ketamine takes a long time to leave a person’s body.

In visiting with Matthew today, because of all the above, he was much more peaceful today and has become more stabilized (now that his body is not fighting as hard).

Dan and I thought that tonight, for a change of pace, we would go out to eat at the famous Pizza Per Tutti.  Steve, you absolutely leave a positive lasting impression everywhere you go.  The waitress, Agnus, instantly remembered you and said to say hi to Steve and she thinks of you all often when people order meal 231.  She said to say hi and that it was always a pleasure to wait on you and asked to send her best, and that she was so happy that your daughter remains pain free.  And as usual, our German friend was right on target with directions.  Dan ordered the lasagna and I had the spinach raviolis, both of which were quite a treat.

Steve, you are absoltue right.  I wish that I could put this car in my luggage and take it home.  45 miles to the gallon and u-turns are a dream to make (I could only imagine).  Once again, both you and our German friend have guided us on a great path.  Daniel’s request to bring one back would be a convertible version (which they do make) and I told him that if you took off the roof of the car, it could fit in our luggage without a problem.  The car does not have power steering, which is why you can go so fast on the highway and feel that you still have full control.  We have saved huge money by renting this car rather than paying for taxis.  Thanks guys.

Melissa continues to do very well and has been on a regular floor since Sunday.  God Bless her.  I am so very happy for her.  She is a beautiful person.

We miss you all and thanks to everyone back home for their dedication and loyalty in continuing to be so supportive of Matthew.  We heard that the pasta dinner was a great success and lots of fun. Thank you Fr. Grant and Rose you have been a so supportive of all that is happening for Matthew and so very patient with the many requests in planning the pasta dinner. God Bless you both! The team of North Providence High School, both faculty and students, and amongst so many others, have come together and put on a first class event for Matthew.  The outstanding dedication and devotion to see Matthew through to the end, and always with smiles on your faces… we cannot adequately find the words to express the love and thanks in our hearts to all of you who put on and attended this event. Also, a very special thank you to WLNE 6 News for their continuous coverage of Matthew’s story! They are truly a team of professionals that have a strong level of compassion for what is happening in the community!!!

God Bless You Always!
Forever Grateful,

Love,

Nancy

Hello To All,

As of yesterday afternoon, Matthew started having violent hallucinations, that by last night they were so severe that his heart rate and blood pressure were out of control.  The doctors had to put him into a heavy sedation/coma in order to try to quiet his body down and try to ease him out of this again in a couple of days.  Last evening, the doctors had tried removing the respirator tube out of his throat (as it was a great source of agitation to him), but he was unable to breathe on his own, so they immediately re-intubated him.  Matthew’s fever continues to rise (all day it was almost 104 degrees).  The doctors are unclear as to the cause of the fever.

I humbly beg God and our Blessed Mother not to abandon their ever so faithful and trusting child, Matthew, during his darkest time.  Unfortunately there are so many unanswered questions that you have, as I have myself.  In the morning, I am going to try to meet with the head of this department and try to resolve many troubling, unanswered questions, as Matthew continues to head down a bad road.

With all of our hearts, we ask for you to come to Matthew’s aid again.  He truly, desperately needs the power of prayer tonight from each and every one of us because he is really struggling.  The RSD has done such a job on all of his insides, that his organs are not able to handle all that is happening.

God Bless You All Always! We miss you all so very much!

Forever Grateful,

Love,

Nancy

Hello To All,

All we can say tonight is that we beg everyone reading this to please pray for Matthew and to keep him safe.  It was a day, that until the day Dan and I die, we will never forget.  Since we have gotten back to the hotel from the hospital, it has been pouring so severely, that Dan said to me, “Ma, even God is crying.” And I said, “You are so right Daniel.”

God Bless You All,

Love,

Nancy & Daniel

I was told that it reached 98 degrees today in Saarabrucken (the room that Matthew is in has no air-conditioning). 

Matthew continues to struggle and his body is weak.  Today his fever was considably higher.  The doctor felt that this fever could be related to something new, a sinus infection.  He remains on strong antibiotics.  In Germany, high fevers are treated (in addition to antibiotics) with continuous complete body, ice water towel baths.  The ketamine was completed today and the doctors have started administering sedative drugs to help him through his hallucinations (due to the withdrawal of the ketamine).  Matthew’s body is weak, and even though he is struggling, I can tell that his soul remains strong. 

Upon leaving, I spoke with Melissa for a minute.  She asked how her buddy is doing and I told her that he is doing fine (the last thing she needs is to worry).  She told me not to worry… that she never sleeps at night in a hospital, and she will be keeping an eye on her buddy.  I assured her that she needs to get all the rest she can and that Matthew is doing fine.  I told her that she is doing well and is making progress everyday, and that we are all praying for her everyday.  She truly has a golden heart.

It seems like Matthew has been in this coma for over a month.  I will be ever so thankful when Matthew wakes up and we can talk with him.  Matthew desperately needs your prayers, as he still has tough days ahead of him (due to the withdrawal).  Please, please continue to pray for both Matthew and Melissa.

We hope that everyone has a wonderful time at the pasta dinner for Matthew tomorrow evening (information on the events page of Matthew’s website).  We are drooling… we have not had Italian food since we left home.  We are home-sick.  Please keep the messages coming.  They truly give us more strength than you realize.

God Bless You All!

Forever Grateful,

Love,

Nancy

Hallo to all, (German for hello),

When I woke up this morning, everything in the hotel was so quiet that you could hear a pin drop, and it was 9 a.m. The sun was so bright. I opened only part of the curtain as Daniel was catching up on some well needed sleep. As I had mentioned before, or for those who just started reading this blog, our room over looks the beautiful German-French Gardens. We have an incredible view of some of God’s many blessings. The birds are entertaining, you can hear the water running from the brook, and see so many different tall trees.

For the first time in a very, very long time I felt rested; regaining emotional strength. For the first in many years I felt the most incredible sense of peace that Matthew will be OK! I sat on the love seat facing this beautiful sunny view and originally sat to say a rosary, but instead picked up a book that was given to Matthew by Ann, a very dear friend. The name of the book is The Tree That Survived The Winter by Mary Fahy. After reading the book and looking out at the peaceful picture of the sun shinning on all the trees and their beautiful branches swaying with the morning breeze, I sat and reflected on Matthew… I don’t know, none of us know what the days ahead will bring for Matthew after he wakes out of the coma… only God does! There have been very obvious signs from the beginning of this journey with Matthew that God is with us. (Maybe problems happen because God wants to hear from us that we still need him…) In some of my prayers I tell God I’m not good at reading in between the lines, put it clear on the wall for me. From day one when Dr. Schwartzman called and told us that Matthew was going to Germany within a month, to when we were flying over the Atlantic Ocean for over 3 hours and the most beautiful rainbow shined through our window and sat for the longest time on the wall in front of us, to the priest who said mass at the Basilica on Sunday, who was a twin of Father who came to give Matthew The Sacraments of The Sick before we left for Germany!!! Coincidence…I don’t believe so!

Matthew went into this coma with an over-whelming, humble, heart full of gratitude and love to all who made this moment possible for him. He had some anxiety of course, but so trusting and faithful to God, knowing that each day he would be in God’s hands! Matthew has always been so very faithful to God and Our Blessed Mother, ever since his First Communion when we started to say the rosary all together. Through the past five years of the most incredible suffering, and when treatment after treatment failed to give any relief (treatments that most times made the RSD worse), Matthew still trusted that God was with him, that there was a reason for his suffering, and would never question God. Why Me? (Not that God gave this to Matthew. It was absolutely a sloppy human error, but that God will bless him with the strength to get through each day until he opens a door for Matthew). With all my heart, and the hearts of all who worked so hard without stopping and all those who donated to make this happen for Matthew, believe that this will be what Matthew has waited many horrific years for.

Matthew is Faithful and so very loyal. Please God, reward him and Bless Matthew with a miracle!!

I have learned so very much from my sons, Matthew and Daniel. They have enriched my life in ways no words can adequately express. I have been blessed!

Now, onto the most important reason for this blog:

In visiting with Matthew today, we found him to be about the same as yesterday. The doctors have started to reduce his ketamine and explained that they will do this very slowly over course of a few days, so as not to cause any new complications and also help ease his hallucinations once he is weaned off the ketamine (everyone has hallucinations caused by withdrawal from ketamine). He still has the pneumonia and the antibiotics are still running, but thank God the pneumonia has not gotten worse. He has a fever higher than yesterday, but his blood pressure is much better. His overall condition is considered stable, but they continue to monitor him very closely. Matthew has come a long way and continues to fight the long battle. He is hanging tough.

Upon leaving Matthew and Melissa’s room tonight, Melissa motioned gently with her little hand for me to come over (Melissa is completely off the ketamine and off the respirator). She spoke very softly, and her first words to me were: “How is Matthew?” May God continue to Bless her. I told her that Matthew is fine and that I admire her courage and perseverance. I told her that she did a great job and to try to rest and go back to sleep and that everyone is still praying hard for her. She truly has heart of gold.

Everyone is entitled to a brief blog tomorrow, and Daniel will make sure of that as he does all of my typing for me.

I ask everyone to continue praying for Matthew and Melissa, as Matthew still has a long way to go.

God Bless You All Always!

Forever Grateful,

Love,

Nancy

Hello To All,

This beautiful guardian angel drawing from a beautiful little angel herself, has been in Matthew’s window from Day 1.  Maren, every time I enter Matthew’s room, your drawing warms my heart and I know that God smiles down on you with the love that this was made with to keep Matthew company.

The power of prayers from a distance has lifted Matthew out of unstable waters again.  All of you, who continue to be so faithful to Matthew, and have prayed so hard for him, God has opened another door.  Today, Matthew seemed to be better, not struggling so hard.  The antibiotics for his pneumonia are continuing.  His blood pressure is a little better and he appears to be more comfortable.  The other complications that Matthew is enduring, at this time, are not as critical as the above ones.  The good news is that the ketamine is still running and if things continue to stay stable it will run that way through the night. Matthew will start tomorrow to be slowly weaned off the ketamine over the next few days.

Again, the power of all of your prayers are sustaining Matthew. You all have been so loyal to Matthew and so dedicated to seeing him all the way through to the end, that with the grace of God a whole new life will begin for him. Matthew always felt there was no need to burden others with his suffering… that God truly knows what he endures and that’s all that matters. We continue to beg God to bestow upon Matthew a miracle. With all of our hearts we believe in them. I love and miss all of you so very much!!!

Please continue to pray for Matthew and Melissa!

God Bless you all always and keep you safe!!!

Forever Grateful,

Love,

Nancy

Hello To All,

It is with a heavy heart that I write to you tonight and share with you that Matthew has developed some new complications.  The doctor told me that early this morning they started Matthew on antibiotics because he has pneumonia, is running a fever, and his blood pressure is running on the low side.  However, his ketamine is still running.  It is absolutely the most helpless feeling to sit next to your son struggling so and the only thing Daniel and I can do is to sit by his bed and pray.  I am so very thankful that Daniel came with us.  I don’t know where I would be without him.  For being a young man, he is an incredible tower of strength.  I know one thing for sure.  That Matthew went into this coma with all of his heart and soul to fight all the way and humbly prayed to God to bless him with a miracle to be able to wake up from his coma and be pain free.  With all of my heart I believe that God will keep Matthew safe and carry him through this trying time.  I personally will keep the Blessed Mother up all night, begging her to hear our prayers and intercede for Matthew.  I am sorry that this is short tonight, but emotionally I cannot even begin to find the words to put down onto paper how we are feeling.

Again, Matthew is very blessed to have literally thousands of people praying for him and with all of their hearts, wishing the best for him.  I ask you tonight to please, please pray extra for Matthew tonight.  He needs us all now more than ever to pray fo him.  I don’t know how I could ever return all that old friends and new friends, and people we do not even know, who are reaching out to Mathew with genuine hearts, for all that you have already done and continue to do.  Matthew always felt that the solution to any problem was the power of prayer.  I love and miss you all!

Please continue to pray for Matthew and Melissa!

God Bless You All!

Forever Grateful,

Love,

Nancy

Hello To All,

Upon visiting with Matthew today, the doctor felt that he is holding his own.  If Matthew’s condition remains the same, in the morning the doctors will re-evaluate his condition and maybe consider increasing the amount of ketamine that he is receiving.  Due to complications that have arisen so far, he is only receiving approximately half of the dosage of ketamine that was initially planned.  The great concern over raising it is that if Matthew starts to get into problems again, they will have to stop the ketamine again.  So tomorrow they will decide if it is better to let him finish the last amount of time in the coma with the dosage of ketamine he is currently receiving (as long as he continues to tolerate it), or increase the amount.  The number of critical factors that have to be considered to keep Matthew safe, aside from the ketamine, is truly amazing.

Dr. Rohr and his staff are constantly on top of Matthew’s situation.

Today we had our first experience with using the wash-house to do our laundry.  Our German friend is so patient with us and is always so willing to explain whatever we are doing. God Bless him!  I am used to putting clothes in the washer, adding soap and push the button… done! It’s not that easy here.  You have too many options for water temperature and types of clothing…

You just could not imagine the problems with this wireless internet for the past 10 days!! It’s up you spend a long time working on a project then lose it!!!! I have no more patients these days for this.  So tonight when this happened again, enough is enough!!!!

After almost an hour on the phone with the internet company, they were trying to diagnose the problem over the phone. Very unusual and this is a very complex problem I heard a few times, I thought I would fall off the chair!  After a very long time and losing another e-mail that I spent quite a while with he believes the problem will be solved! He was a very kind representative and keep researching I was not going to let him go until this was resolved. He said we have found the problem and in a few hours you should be golden!!! Time will tell….

 PASTA DINNER with Raffle Saturday, July 26th - 5:00 pm - 8:00 pm

Mary Mother of Mankind Church Hall

25 Fourth Street

North Providence, RI (off Mineral Spring Ave.)

This is to clarify that the above Fundraising Pasta Dinner for Matthew that will be held on this Saturday night is absolutely still on and that tickets can be purchased at the door.  We wish with all of our hearts that we could join you.  First because we love and miss you all, and second because we have absolutely no Italian food since we have been here.  Will someone please takes some pictures so that when Matthew is strong, he will absolutely enjoy looking at them.

We love and miss you all.  Please continue to keep Matthew and Melissa in your prayers.

Forever Grateful,

Love,

Nancy

Hello To All,

This is the view of Matthew’s room that we told you about yesterday.  This picture was taken yesterday just after an hour of heavy rain.  We are so high up that you can see all the tops of the trees.

We visited with Matthew today and met with Dr. Rohr, who said that today he increased the amount of ketamine that Matthew is receiving and that his body seems to be tolerating the new level of ketamine.  His high enzymes that were causing a problem initially are continuing to go down with the grace of God.  So at this time that no longer seems to be an issue.  Matthew is retaining some fluid, but this is not unusual.  Dr. Rohr explained that this happens during a ketamine coma at times and at this point we need to just take one day at a time and see what Matthew’s body can tolerate, and proceed accordingly.  Dr. Rohr can well understand the great need for this ketamine to continue running, but as he has said from day one, that his first and top priority is to keep Matthew safe.  Dr. Rohr is not only a brilliant physician, but he is extremely patient, kind, and understanding to spend time answering my many questions (and for those of you who know me, when it comes to my sons, I can never ask too many questions).  Each day seems like weeks to watch him lay in his coma.

Our German friend continues to be a tower of strength to us each day.  He spent a great deal of time trying to help us with our computer problems today and then showed us around to help us find some restaurants that we can make out what the food is on the menu.  He has been a saving grace in so many ways.  I ask each and everyone of you reading this, that the next time you pass by a person who does not speak your language, to please take the time to try to help them.  I am 56 yrs old and I have never felt so isolated due to the language barrier.  You truly have to walk in these shoes to understand what I mean.

After leaving Matthew, we went to mass at the basilica.  It was so beautiful and simply breath-taking.  It was a source of great after an incredibly emotionally draining week.  Although I only understood two or three words out of the entire mass, it was a beautiful mass.  Before mass, I lit a candle for Matthew and one for Melissa, that God would keep them save through their comas and wake up pain free; one for our German friend in thanksgiving for all that he has done for us; and one that God will bless each and every one of you who has reached out to Matthew with your love, prayers, and support as if he were your own.

We thought that you might enjoy some pictures of the Basilika.  So until tomorrow, may God Bless each and every one and keep us all healthy, safe, and together, because our extended family has grown by the thousands.  I love and miss you all so very much!  God Bless You All Always!

Forever Grateful,

Love,

Nancy

Hello To All,

God has heard the prayers of everyone and has Matthew back on track!  Thank you so much for all of your prayers and being so devoted to seeing Matthew through this.  As of early today, Matthew’s ketamine was turned back on. The doctors felt that his enzymes had come down enough and were within safe parameters to re-start the ketamine.  Late this afternoon, after the ketamine had been running all day, another test was done to check the levels, and they are continuously decreasing!  The medication that they are giving to help him is working wonders.  The doctor told me that we always have a back-up plan.  Matthew’s fever is better as now it seems to spike in the afternoon and go down at night.  All the cultures that they took to test for infections came back negative.  Also, the fever could just be the body’s way of reacting to so much happening to it.  The doctors are just so on top of him in every way.  He is truly in the best hands possible.  We are so very thankful that when the doctor came in to talk to us, our German friend was visiting Melissa.  He was so very instrumental in translating for us since this doctor spoke very little English (especially at this time when all of the details of Matthew’s health are so important to understand).   Matthew’s lungs are now doing well.  The medication for that has worked very effectively and they will keep him on this in hopes of avoiding this happening again.  I guess that Matthew’s body had a lot of adjusting to do to all of the high doses of ketamine.  Daniel and I say the rosary each day by Matthew’s side and in looking out the window, the view is absolutely beautiful.  You are so high up that all of you see are forests of trees.  The feeling of being so close to God gives great strength.

We have taken some pictures to post and we will do this at some point tomorrow.

Your love and prayers are sustaining us more than you will ever imagine.  I feel like Matthew has been in the coma for weeks already.  I ask you all to please continue praying for Matthew and Melissa, that God will keep them safe and wake them pain free.

God Bless You All Always!

Forever Grateful,

Love,

Nancy

Hello To All,

After an incredibly worrisome night, this morning we had a welcomed visit from our German friend.  He is an incredible tower of strength and the most thoughtful, caring gentleman that I have had the pleasure of meeting in years.  He spent time solving numerous of our other problems, from internet down to alarm clocks.  He has been a gift from God to us.  I truly cannot imagine where I would be without all the help he has so generously given to us, and is always adamant about never taking anything in return.

While visiting Matthew today, the doctor came in to go over everything that has been happening with Matthew.  The ketamine still remains on hold for a few reasons.  First, Matthew is having a problem with his lung functions/his lungs are retaining fluid, which the doctor felt was unusual for a 21 year-old man and also at this early into his treatment.  They have given Matthew medication to help this problem and the doctors said that it is helping him.  The next thing is that Matthew’s muscle enzyme blood levels that affect his kidneys have come down, but are not down enough yet at the current time to re-introduce the ketamine.  The next set of blood-work will be drawn at 8pm tonight and if the muscle enzyme levels continue to decrease, later tonight they will re-start the ketamine.  Matthew remains with a fever.  Cultures have been drawn and sent to the labs for analysis, so that the correct antibiotics can be started.  For the past two days that the ketamine has been put on hold, Matthew continues to remain in a coma.

Melissa continues to do well, God bless her.  And our German friend is so faithful.  He comes in everyday to visit her and check on her with the doctors. 

We have been, unfortunately, to many intensive care units in the past five years.  This intensive care unit runs like clock-work.  The doctors and nurses are the most incredible, knowledgeable, and caring team that we have been blessed with.  The intensive care unit is immaculate; the patients’ sheets always look like they just came off of an ironing board.  Everyday Matthew has been clean-shaved; today when I arrived they just got through oiling his legs and feet to keep his skin well moisturized, and he has been turned frequently.  They just absolutely take care of their patients’ full body needs.  It is just beautiful how they care for their patients.

I again ask you to please continue to keep Matthew in your prayers.  I love and miss all of you!  Your continuous support carries us through these very difficult and trying days, in which he never know what is going to happen next.  Despite these concerning complications, with all of my heart I believe that God will bless Matthew with a miracle in the end.

God Bless you all always!

Forever Grateful,

Love,

Nancy

Hello To All,

While visiting Matthew today and meeting with the doctor, it was with great disappointment and concern that due to Matthew’s blood-work that was drawn at 5 am today, by 7am, Matthew’s ketamine was put on hold for the day.  The concern is that the high levels of muscle enzymes is causing problems to the kidneys. Matthew developed a fever, which causes great concern.

I am sorry that this is short, but we wanted to keep you updated.  My mind and heart is with Matthew.

We ask everyone to please, please keep Matthew extra special in your prayers tonight as he has suffered excruciating pain for so many years and has waited so long for this only opportunity for relief.  We beg God to keep him safe.

Forever thankful to all of you for all of the love, support, and emails.  I am so sorry that I have not been able to respond to emails yet, but with of my heart I am thankful for all of your support. 

Forever Grateful,

Love and Prayers to All,

Nancy

Hello To All,

Today was another beautiful, sunny day with a cool breeze… a picture perfect summer day.  Dan and I went to visit Matthew at our scheduled time in the Intensive Care Unit.  The doctor said that Matthew is stable, tolerating the ketamine well, and is on target with the schedule of his treatment.  The doctor explained that usually the first two to three days are usually uneventful (we are very thankful for), but it is from there on that things can really start to change.  Matthew continued to look the same as yesterday:  very peaceful.  The doctor suggested not to try to communicate with him to keep the room as quiet as possible.  It was very hard not to talk to him and let him know that we were there and that everyone is praying for him, but we always have and always will do what is best for Matthew, not what will make us feel better.  Melissa is also stable and is also on schedule with her treatment.

Daniel and I, after visiting Matt in the hospital, ventured out to find some place to get something to eat.  So we got off the Audubon and got lost.  We came across an asian food restaurant and we figured it might be a while till we get back to the hotel and figured we’d eat there.  With our good fortune, there were three women at the next table having a business meeting, that on their own offered to help us with the menu (and you know me that I like to talk to everyone) so I asked them if they could please give us directions back to the hotel.  They were so very kind:  they drew us a very detailed map.  I guess that they could tell that I was very lost.  I am so thankful that God continues to put good people in our path.  So we made it back safe and sound, obviously, because we are now blogging.  I remain so thankful that there is still more good people than bad in this world.

Please continue to keep Matthew and Melissa in your prayers.

Forever Grateful to all!

Love,

-Nancy

Hello To All,

I know that everyone has been anxiously waiting for news directly from Germany.  With all of my heart I am truly sorry.  Day one was really exhausting and then the next couple days we had a tough time getting set up with computers, internet, ect. For example, today we have spent hours writing and trying to insert photos and then sent it and lost it!!!! Thankfully Russ was able to keep some information coming to you.

On Monday morning, Melissa, our German friend, and I met with Dr. Rohr to talk about all the risks and medical information prior to starting the ketamine coma the following day.  Just so that you get to know who we are talking about, I am just going to introduce who Melissa and our German friend are in this blog.  Melissa is Matthew’s ketamine coma partner (we now call then the M&M team because they are so supportive of each other).  Matthew had never actually spoken to anyone who suffered from RSD before, who could truly understand the suffering he endures daily.  I had the privilege of talking to Melissa prior to coming to Germany.  Since she was coming alone, we made plans to stay at the same hotel for obvious reasons.  She is an incredible mother who has two beautiful daughters.  There was an instant bond between all of us, as for both of us, our children are first in our lives.  We have been so blessed to have been placed in the hands of our new Germany friend.  He is truly an incredibly humble, compassionate,  and intelligent person who gives with all of his heart and expects absolutely nothing in return.  His vast knowledge of the world… it leaves you in awe.  He has for Melissa and ourselves made all arrangements on one to two days notice, and has covered every need that you could imagine with a smile and always says “What’s next?”.  I consider myself to be a strong person, a survivor, and one who will never give up until I get what I need for my children; but I have to say that I guess God knew that I needed big help here because this was one mountain that I could never have climbed alone.  Our German friend is now a member of our family and for the rest of my life I will always be indebted to him because he has taken care of all of us as if we were his own. 

After meeting with Dr. Rohr on Monday, I left with a very strong feeling that Matthew was being placed in the hands of a doctor who is the best of the best.  This gave me more comfort due to the severe progression of Matt’s RSD and all that it has done to the functioning of his body, which makes his risks higher.  When coming back to the hotel room and I went over everything that I was told by Dr. Rohr with Matthew, including that the risks of this procedure were higher than anticipated for him, Matthew still strongly had no second thoughts about it:  “There are two things Ma… I totally feel I am in God’s hands, as he is the only one who truly knows the extent of my daily suffering… and second, I just could not continue living as a prisoner trapped in my own body.  I am at the point that I have endured all I can humanly possibly take.”

So the evening before the procedure, Melissa came to our room and we spent the evening together.  It was good for all of us.  Although they both strongly wanted to go forward without question, the anxiety was high and the waiting was long.  We had a treat (that we have never done for ourselves in all the traveling and treatments Matthew has had):  I called for room service and we all had ice cream desserts (ice cream is one of Matthew’s favorites and it goes down easy for him). 

Tuesday morning, the countdown was on and the day had finally come.  And with the grace of God, for both Matthew and Melissa, it will be the beginning of a whole new world that they are both so deserving of.  We arrived at the hospital at 11 a.m. and of course our German friend came with us (as he has done for every time we have had to go anywhere).  He organized transportation for Matthew.  He is truly amazing.  Dr. Rohr met with us for a few minutes and spoke to Matthew.  Melissa offered to let Matthew go first.  She said “I am a mother and I can see how much he is suffering.”  She truly has a golden heart.  Matthew was taken in at 11:35 a.m. and sharing one last quick moment of my love, encouragement, and support for him, I told him to believe that his miracle is waiting to happen and that God, the Blessed Mother, the Holy Spirit, his Guardian Angel, Auntie Theresa, ect., … with that much power in Heaven, he is covered. Matthew is so strong and brave, he is my hero!!!  And we all pray for the same miracle for Melissa.  And I ask you that when you pray for Matthew to also pray for Melissa, as the next seven days are the most critical.  Dr. Rohr came back out approximately 1:30pm and personally escorted Melissa (at this time Matthew was already in his coma).  He was very kind and compassionate with her.  Daniel and I waited 5 hours at the hospital to have a chance to go in and see Matthew and Melissa (as they share the same room).  I am no stranger to seeing intensive care units, but this room was beyond impressive.  The technology, equipment, and set up of the room was absolutely state of the art… in the instant of pushing a button, medications are all pre-loaded and ready to go in an instant.  I am a worrier, but felt that God forbid, in case of an emergency, that they have him covered.  The staffing is always there.  I had personally tried to prepare myself as I have seen through my many years of working at a hospital, patients in comas, on respirators, in intensive care… but when its your own, its a totally different story.  But upon approaching Matthew’s bed, despite the countless tubes, machines, equipment, ect. running, for the first time in over five years, Matthew had an incredibly peaceful and serene look on his face, as if his body was pain free.  I was absolutely taken back.  God works in mysterious ways… even at this time, he was not only watching out for Matthew, but sending me comfort also. 

Although leaving at the end of visiting hours was hard, I felt that he and Melissa were in the best hands that I could possibly hope for. 

I am with all my heart forever grateful to the endless out-pouring of love, prayers, and support that has been given to Matthew and all of us.  Without all of you Matthew would never have had this opportunity at this time and his health was continuing to head down hill rapidly with no turning back.  You did for Matthew what I as his Mother could not do.  You have responded so quickly and because of that, Matthew is in Germany and has already begun his treatment in hopes of ending this nightmare that he lives daily.  The golden hearts that have reached out to help Matthew as if he were their own start from our incredible, caring, supportive, stopped at nothing to help Matthew, Town of North Providence, under the leadership of Mayor Lombardi, and has extended to as far as donations and prayers from Australia, Ireland, the Netherlands, Canada, Thailand, Texas, California, Illinois, Singapore, and so many other places.  I am left speechless by the continuous love and support for Matthew at this crossroad in his life.

Thank you for all of the emails and support that have been coming in.  After visiting Matthew in the hospital, it replenishes great strength to come back to the hotel and be blessed with your words of encouragement.  If anyone has any thoughts that they wanted to share privately, you can email me at:  Nancy@SetMattFreeOfRSD.com.

Love to all and forever grateful!  God Bless You!

-Nancy

Hi, everyone!

Matthew was admitted into the hospital today and began the Ketamine Coma Protocol.
There is a staff person in the room to monitor Matt.

Thank you to all who have sent words of encouragement and prayers. Please keep them coming. They mean so very much to him; to all of us.
And, please continue to spread word of Matt and his journey by referring people to the website: www.SetMattFreeOfRSD.com .

May God watch over and bless you, Matthew, Nancy, and Daniel

Russ

Hi.
While their internet issues seem to be fairly straightened out, now, there is obviously so much on their plate, preparing for tomorrow. (More on that later in this Post.)

Today, Nancy went to the hospital and met with Dr. Rohr who is in charge of the Ketamine Coma Protocol. They discussed Matt’s medical history.

Tomorrow morning (German time), Matt will be admitted to the hospital and if things go smoothly, then the coma process will begin.

I ask that if you are moved to do so, please say a special prayer for Matt, Nancy, and Daniel. - Every prayer is so important!

Russ

I just spoke with Nancy at the hotel in Germany. She, Matt, and Dan are fine, albeit exhausted and drained.

Nancy wanted me to let you know that due to some technology issues they are having, she cannot respond to emails today or post her anticipated blog message. - But, hopefully, that will all change, sometime tomorrow, so please check back.

Meanwhile, I wanted to thank all of the incredible staff and patrons who were involved at today’s fundraiser, ‘A Drive For The Cure’, at the Atlantic Golf Center, in So. Attleboro, MA. - People were so kind and compassionate. - A special ‘Hello’ to the North Providence High School students who had helped with a car wash fundraiser, last month, and who came to play golf, have some fun, and further support Matthew, today. - Thank you, Kathy and Anthony for all of your love and support!

WLNE TV 6 News came and taped a segment on the fundraiser which aired at 6pm tonight. - We are truly indebted to them for their continuing coverage.
Thanks also go out to the North Providence Breeze and the Pawtucket Times newspapers for their ongoing support for Matthew.

Thank you all for your prayers and financial support.
May God watch over and bless you and yours!

Russ

As a parent, I cannot begin to thank you enough for all that you have done on Matt’s behalf!
Yet, Matt still needs your support to achieve the necessary follow-up treatments, here in the U.S., upon his return.

With that in mind, I ask you, if possible, to attend tomorrow’s Drive For The Cure Day, at the Atlantic Golf Center, 754 Newport Ave., South Attleboro, MA. (Only 15 minutes from Downtown Providence.) 

All proceeds from 9am - 5pm will go to Matt’s Medical Fund. -

Enjoy 18 Hole Miniature Golf, a Driving Range, a 9-Hole Pitch & Putt, and a 9-Hole Par 3 Course!
Plus, there will be a raffle for some incredible golf equipment!
Call the Atlantic Golf Center at 1-508-399-8400 with any questions.

I hope to meet some of you there!

Russ

Heartfelt greetings to all of you, beautiful souls, without whom Matthew would not be on his way, today, to regaining his life from the monster that is RSD/ CRPS!

It is because of your outpouring of support, your donations, and, most importantly, your prayers, that Matt, his mom, Nancy, and brother, Daniel, are on their way to Saarbrüecken, Germany for the Ketamine Coma Protocol.

New England Ambulance graciously provided ambulance service from North Providence to Logan International Airport in Boston. Their fine employees, Dan and Colby stayed with them until they boarded the plane, this afternoon. - The employees of Lufthansa and the TSA were outstanding in helping us through a difficult process. They even arranged for me to have a special ‘Security Pass’ so that I could spend time with Matt, Nancy, and Dan while they awaited boarding. - Coincidentally, (or a Divine sign), an extremely helpful, Lufthansa manager was a resident of Saarbrüecken!

They will not arrive at the hotel in Saarbrüecken until approx. 3:00 am, U.S. EST, Saturday. - As soon, as Nancy can, she will begin posting messages here, so that you can know how Matt is doing. For it is because of you, that he is there!

As a parent, I cannot thank all of you enough, for what you have done and will continue to do on behalf of my son, Matthew. - May God watch over and bless you and yours!

Russ