Archive for September, 2008

An Update at Last

Wednesday, September 17th, 2008

Hello to all,

We are home at last but not for long.  I would first like to say that with all of my heart I truly thank you for the incredible volume of continuous emails of support.  That has been an incredible gift to us and is never taken for granted.  This has been the most incredible journey, filled with so many ups and downs, and so many different emotions.  This evening, for the first time since the days before we left Germany to come home, that I have had the chance to check my emails.  I have over two hundred new emails to open.  After a couple of hours of reading emails, I realized that it is getting so late, that I better get to the blog, and as it works out, I will, some at a time, read and share with Matthew all of your emails.  They will bring him so much joy.  It will take me a while, but I will be happy to respond to your emails.  Please do not feel that I do not want to , especially those of you have shared your own heart-breaking stories with us (and there has truly been so many of these kinds of emails, our hearts and prayers go out to each and every one of you).   

Matthew was discharged from the hospital in Philadelphia at the end of last week, after eighteen long days and nights.  We are beyond exhausted, drained, and so very incredibly run down.  Upon heading to Philadelphia for Matthew’s admission, I was unable to take a laptop with me.  It really gets to be quite a circus act with me trying to push Matthew and pull a piece of luggage, especially when I can hardly even walk myself.  So I was not able to read or respond to any emails.  While we were in the hospital, I would call home to Daniel to type the blog for me, (that is never a quick thing to do with me) but then it got to the point that his schedule was so demanding, and this semester of night after night staying up late studying, I didn’t have the heart to put one more thing on his back.  It was not my intention to just stop updating all of you, but life took over and one day just runs into the next.  In just the few days that we have been home, trying to set up appointments with nurses, labs, surgical suppliers, physical therapy and calling pharmacies, the days have been very hectic.  In placing numerous calls, the first question that I was asked is “How is Matthew doing?” and “What’s going on with the blog?  Why haven’t you written?”  I am so sorry.  It has truly just been dealing with the bare necessities and trying to catch our breath.

Today Matthew received a large envelope of sunshine.  The hotel in Germany had been putting aside any mail that was still coming for Matthew and then forwarded them to us.  It was a pleasant surprise, instead of just the usual bills in the mail.  Matthew truly enjoyed the beautiful cards and letters of encouragement, prayers, and support for him.

Matthew was discharged from the hospital and the doctors were able to treat and stabilize the medical complications he was still enduring as the result of the ketamine coma.  So with the Grace of God, these new issues of tachycardia, hypothyroidism, tremors, and follow up treatment for pulmonary embolism, will resolve over time and with treatment.  Unfortunately, the epidurals, blocks, and infusions that Matthew received in the hospital in Philadelphia were unable to give him any long term relief for the RSD pain he is still enduring.  Matthew is without a doubt, in so many ways, definitely better than before he went to Germany.  Matthew has been freed of the brutal migraines that he was enduring 24/7; the RSD pain in his spine, throat, and hands has incredibly improved; he is able to tolerate sitting up in bed; and certainly enjoys being able to feed himself and eat regular food again.  He remains with a low level of RSD pain throughout his body, however, his feet are still excruciating and he is unable to walk.  Matthew also has a new area of intense and throbbing RSD spreading to his right ankle and his right lower leg, which has Dr. Schwartzman and all of us very worried, as it is critical to try to suppress this new spread of RSD.  Nobody knows better than Matthew how his life was before.  Dr. Schwartzman is sending Matthew to the Hospital of Special Surgeries in New York for further testing and evaluations of his right ankle and lower leg.  Matthew has no mobility of his right ankle at all and is unable to bear any weight on it. It is difficult after receiving so much relief in many ways to be still confined to bed. Hopefully there will be a way to get Matthew relief so as to move past this. It will take a long time to recover from all that he has been through as he is still weak.  So we are awaiting the appointment for New York that will probably be at the end of next week.  I will let you know the result of the visit. After that Dr. Schwartzman has another plan but we are taking one step at a time. Matthew has always been determined, and remains  focused and never willing to give up his hopes and dreams. For now things are just at a slower pace.

Our days continue to have many challenges and obstacles, but with the continued Grace of God, a door will open for Matthew.  May God watch over and bless each and every one of you for all that you have done for us!  Also, we pray for all of you, especially those who are enduring your own terrible battles and struggles with your health.

Forever Grateful,

Love,

Nancy

 

It’s Hard to Believe That It is Friday Again

Friday, September 5th, 2008

Hello to all,

At a last minute change in plans, the doctors decided that it would be best for Matthew to try two different other types of blocks.  As usual, Matthew’s trust and faith in Dr. Schwartzman’s guidance came through for Matthew.  This was the first time in five years of countless blocks, epidurals, procedures, ect., done at numerous different hospitals, that there was success in achieving total numbness in Matthew’s right foot and also in his right leg.  In the past, none of the procedures were able to free his right foot of pain.  Dr. Cohen did a phenomenal job and was beyond compassionate and understanding of Matthew’s inability to endure more pain that he already has.  The unfortunate part is that the block only lasts for approximately sixteen hours, but for Matthew, it was sixteen hours of heaven.  While the block was still working, the doctors started a five day infusion and when the block wore off, his pain came back, but there were some positive changes from the block, such as Matthew being able to, with the guidance of physical therapy, tolerate (with great pain) putting his foot down on the floor.  Before the block, Matthew was unable to tolerate even just putting his toes down.  So the plan is to run the infusion for five days and then they will repeat these blocks again, in hopes of increasing the mobility of Matthew’s foot and also, with the Grace of God, permanently reduce or eliminate his pain.  We both cannot wait to get home, but despite this new ordeal of the spreading of Matthew’s RSD pain to his right ankle and lower leg, Matthew is experiencing an incredible difference from before the ketamine coma.  The RSD had taken such a toll on Matthew’s body and his resistances were so low, but Matthew is very thankful for the great relief in so many ways that he has received.  In many different ways, I believe that Matthew was blessed with the miracle of his life in coming through some of the most incredible, critical weeks of his life in Germany.  We continue to pray for and believe that a miracle will happen for Matthew.  With all of my heart, I thank all of you for your continuous support and prayers, and for seeing us through until the end of our journey, when we can come home.  The doctors and entire staff here have been so good to us, but there is still no place like home. 

May God Bless you all always!

Forever Grateful,

Love,

Nancy

More Bumps in the Road for Matthew

Monday, September 1st, 2008

Hello to all,

I am so sorry that I missed writing to you on Friday.  This has been the most continuously draining journey that words could not adequately describe.  Matthew, late Wednesday afternoon, was taken down to the O.R. and the doctor was incredible.  He successfully placed the epidural on his first try.  By late Wednesday night, Matthew was starting to receive some pain reduction in his feet and the plan was to keep the epidural in for five days and each day increase the dosage.  On Friday morning, when a different doctor came in to change the epidural dressing, he said that the epidural had fallen out of Matthew’s spine.  The epidural was not able to be put back in because Matthew remains on blood thinners and due to the way that the epidural fell out, they needed to watch for any internal bleeding for 48 hours.  Also, Matthew has great hesitation about re-inserting an epidural because it might bring back his RSD pain in his spine.  And that is certainly one nightmare that he does not want to re-live.  And then, of course, that brings us into the middle of a holiday weekend.  On Saturday, Matthew had an MRI of his right foot and ankle to shed any further light on the excruciating new pain in Matthew’s right ankle and lower leg.  He remains unable to bend his right ankle or bear any weight on his right foot.  Today, the doctors started introducing an oral form of a blood thinner, in order to wean him off the two times a day shots of blood thinners, that he has been receiving for the past seven weeks. Tomorrow, Matthew is booked for another MRI and Dr. Schwartzman returns tomorrow, and at that point he will further guide Matthew as what to do next to resolve this pain.  So again, we have to wait and see what tomorrow brings.  Matthew is trying very hard to remain positive enjoy the relief that he has received from his RSD pain in the rest of his body, and of the many horrible symptoms of the RSD that he was enduring before the ketamine coma; but it is hard with this new severe issue of RSD in his leg.  And with the Grace of God, it will not continue to spread. 

Please God, Bless Matthew with the strength to stay strong and continue to maintain his positive attitude.

May God Bless you all always!

Forever Grateful,

Love,

Nancy