Look Before You Leap

This post contains random thoughts in random order with random emotions experienced by a grieving mother. This is your only warning.

Nick's 27th birthday has passed.
He will be forever twenty-six.
Nick's memorial is over.
Life goes on.
Life sucks.
The loss hits like a cold, bitter wind.
It takes my breath away and I cannot breathe.
I am numb with the cold.
I will never be warm again.

My mind is scattered and thoughts come and go in random patterns that make no sense. I forget things. I lose things. I cannot sleep. I am up all night because when I go to lie down I cannot stop thinking about Nick in the hospital and how horrible it was and then I start crying and I can't get the thoughts out of my head. I wonder when I will be able to go to bed and not cry.

The memorial was beautiful. I know Nick would approve. It doesn't help. I am glad it is over and I am sad it is over at the same time. Now that it is over, it feels like everyone will carry on. What else can be done? I hear that little bell sound from the Southwest Airline commercials and I hear a voice saying, "You are now free to move on with your lives." Well my life doesn't feel like moving on right now and I don't understand how anyone can.

I go into Nick's room every night. I stand by his bed. I rest my hand on his remains. I am still in a state of shock that this is really happening. I stare at his clothes. I look around his room and think about when was that last time he was actually in his bed. The last time he slept in his bed was in MAY!! I think about when he first came home from his BMT and then when he was in IPOP and he got sick. And he had to get IV antibiotics at home. I think about how I would go into his room for his 2AM dose and how he would thank me for taking care of him and tell me how much he loved me.

The clock on his desk blinks random numbers. (At some point the power must have gone out and it never got reset because Nick was never back in his room!) Every time I see that clock blinking it reminds of the fact that for Nick there is no more time. There is no future. Time for Nick has STOPPED!!! It seems like time has stopped for me too. I feel so sad and so old. This has taken a toll. I don't know if I will be able to turn this around.

I was reading Nick's facebook. I read his words and I just cry. I can hear him say the words. They are so my Nick. I want to hear his voice again. I don't want to turn off his cell phone, because this is the only way I can hear his voice ever again. I found the results of a survey he took. "What Grateful Dead song are you?" His song was "Ripple." And then this description,

"You are quiet contemplation. Even in crowds you are an island of peace and solitude. Wise beyond your years and never impetuous, you think everything through and are usually steps ahead of any situation you come across. People look up to you for your wisdom and often come to you for advice and spiritual guidance." Wow...right on FB quiz. You hit that nail right on the head. Nick please help your old Mama...I need your wisdom right now.

Today, I was so busy doing stuff I don't want to do. I just want to stay in my house right now and try to get my life back in order. I am under the mistaken impression that if I get my shit organized I will somehow be able to deal with this ungodly mishap of life. I know there is no amount of organizing or cleaning that will take this pain away. But, by God, I'll sure as hell die trying. As I drove home, it hit me again (as it often does, out of the blue and without warning) Nick is not here anymore. NICK IS GONE! And then a huge wave of sadness hits and then the tears begin again.

Today Glenn found a box turtle in the street. He took it to the school. I joke (morbidly)..."Oh, that's Nick." Glenn tells me about a toad that got squished in the driveway. I joke (dark humor)..."Oh, that was Nick." I don't believe in that sort of thing. I am tired of hearing how Nick is talking to everyone else but me. He talks to this one and visits that one and tells stories to the other one and I am sorely hurting every time I hear one of these stories. Why doesn't he come and see me? Why doesn't he come to see his Mom? (These are rhetorical questions! Please don't answer them!!!!!!)

When Nick got sick I bought some cards. The cards were full of hope and positive thoughts that mirrored our hope and our dream that Nick would beat this leukemia, that he would survive the "cures" of medical science and emerge unscathed by the myriad of horrible side effects and complications of a BMT. This particular card I never got around to giving him. It read, "Leap and the net will appear." It serves as a cruel reminder that our net had a huge hole in it...if we ever had a net at all. Nick lept, he had faith, he trusted his cape and look where it got us...squished on the pavement of life.

One Day Closer

Two days before what would have been Nick's twenty-seventh birthday. I am so sad that no matter what we did, we could not make him better so he could be celebrating this birthday with all of the family and friends that will be gathering instead to celebrate his short time here on this earth. Nick had so much to give and so much more living to do. All he wanted was to be "better." He did everything he did with that goal in mind. He would always say, "If this is what I have to do to get better, then I will do it."

I have a notebook of his. This is where he wrote down a lot of his passwords for his bank accounts and other such stuff, "just in case." When I opened this notebook for the first time on the very first page Nick had written "2008 Goals." There I find his handwriting (which I treasure) and the lists of goals and projects...plans for the future. A future that is now lost. The list just really sums up so much about Nick. He was a planner to some extent and yet he could really go with the flow. He liked to organize his thoughts and get the ideas flowing and down on paper for later perusal. His goals included work and play, health and budget. Some goals were big, like the house he wanted to design and build. Some were simple like "practice calligraphy." Oh my God, how this breaks my heart and makes me cry every time I read these concrete reflections of Nick's awesomeness. How much money to save and hobbies he wanted to pursue like cooking. He had some plans of what kind of exercise he might want to start doing. He also included ways to "enrich" his life with learning, like a goal to read "1 book per month, 3 magazines per month, and translate 2 speeches per month." I don't know when in 2008 he wrote these goals, there is no specific date, all I know is those goals will never be met. All of his dreams and my dreams for him have been laid to waste; shattered into a million pieces. Pieces that pierce my broken heart and cause so much pain.

When he was home in May, he must have started a to do list, for that is in here too. It is dated May 8th, 2009. I guess he got that trait from his Mama. Such mundane tasks are listed there, but, to him they were a big deal...to be able to accomplish even the simplest of day-to-day jobs. Things like "file bills" and "budget 09." You see even then, he believed, we BOTH believed, we ALL believed, he would beat this thing. We all wanted this so badly!! And then later that month, near the end of his three weeks home there is this poem he wrote. Torn between the reality of lungs that seemed to be getting worse each day and dreams that wanted to believe and keep on living. Keep on fighting...oh, my Nick, I wish I could have helped you more. I wish that "To Do List" had more fun things on it. I wish we knew that this is where we were going...how would we have done things differently? How could I have made your last days happier and more peaceful? I love you my son. Am I selfish to want you to still be here with me? I pray you are at peace and doing all the things you love. Do you like that tree? I think of you when I see big, beautiful trees like this one. I think of you reaching to the heavens and offering your branches to the birds. I try to think of you as returning to the earth and a world that I know nothing about. I pray you are surrounded by so many who love you, wherever you are hanging out. Here is Nick's poem written on May 28th, 2009.

Broken
Physically beat down
With your ass dragging
your mind starts to follow
Spirits stay strong
for a while
But each day
is a little harder
a little more short of breath
one day
closer
This disease is trying to break me
But I will prevail
Because I will never give in.

You NEVER gave in Nick. I know that you NEVER wanted this to be the way this ended. You were never going "gently into this good night" ...you fought and you gave it EVERYTHING you had. You were a most courageous and fearless warrior in this battle for life. You always chose life. I love you more than a wagon full of puppies. Mom

The Other Side

Overwhelmed with everything. No patience for anything. Spending hours and hours of time preparing, trying to get things right. Spent hours last night crying with Glenn over our poor, dear, lost son. The pain never stops. The tears finally did. Then I went to his room to look for things to put on his memorial table...found the Christmas cards I gave him last year. He had saved them. Cue the tears. Why does it hurt so much? I hope Nick is kicking back on a beach some where. Please come see me my sweet boy...I miss you so much. We all miss you so much. I love you always and forever. Mom.

Lost

Moving through each day.
New terms for a new reality.
I will never see my son again.
Emotions are a wiley and evil bunch.
One moment hiding away and the next leaping upon me like a lion from a tree.
Hating every moment of every day that I must take another breath in a world without my son in it.
The wound is deep and the pain comes sharp and without warning.
I am not "OK."
I am bitter and angry and tired and full of such a sadness as I have never known existed.
Every day there are more reminders of the cruelty of this loss.
Memories are a bitter substitute for the vibrant soul that was Nickolas.
Every night I go into Nick's room and mourn for my sweet first born son.
I cry for his father and his sister and all those whose lives and hearts were shattered the day he left this world.
I just want him to come home.
I sometimes feel like I am losing my mind, for surely, my heart has already been lost.

A Broken Heart Still Beats

Years ago I purchased a book. I am not sure what drew me to this book. I guess I was hoping to gain insight into what the parents of my patients were experiencing when they lost their precious child. Well, hey, now I know first hand what it feels like. And it really sucks! The title of the book always hits me hard and now as if fate proclaimed it, I can live it as well. The title of the book is "A Broken Heart Still Beats." Truer words were never spoken. This book is a compilation of stories and poetry written by parents who have experienced the loss of a child. They are quite heart wrenching, but, they surely speak to me now. So when the spirit moves me, I am going to post some excerpts from this book, because it says what I am feeling better than I can say it. It helps me know that everything I am going through has been experienced by other unfortunate souls who have had to lose a child to join this "broken hearts" club. The words below came from the book and were written by Gordon Livingston, a psychiatrist, who lost two of his sons - one to suicide, the other to leukemia. The following is taken from the journal he began keeping when the family was given six-year old Lucas's cancer diagnosis.

"May 29, 1992 (ten days after Lucas's death):
...the pictures in my mind of Lucas dying will give me no rest. How can I erase, or at least soften, these images and remember him as he was in health, his sweet face, happy smile? How could they have put him and us through those changes? I never felt warned about those possibilities in the dry words of the "informed consents." What is the process now other than waiting for time to pass? Should I try to get back to work next week Would it help to travel far away or will I just miss him in as different place? I need some faith in God, but where was He when we needed him, when so many were praying on our behalf? I feel old, as if I have lived too long, seen too much, suffered beyond any hope of redemption. I am empty, barely capable of loving those who need me...and the world goes on as if nothing has happened. I don't want to be a part of it...."

There is so much more from this same fellow. His words shoot straight to the heart of the matter.

"June 17, 1992
The loss of my son has brought me to the edge of an abyss. I stare into it and see only darkness. I told Clare tonight that "I think about him all the time, don't you?" The answer, of course, was yes, and we both began to cry. I said something about being sure he was all right. She said, "I hope so...I just want him back." I start to tell her how sorry I am, but she knows that and I can't even think the words without remembering Emily (Lucas's sister) at his bedside when he died: "I'm so sorry, Luke. I'm so sorry." I don't see how I'm going to get past this."

"February 10, 1993
...Sometimes at night I think about driving to the airport, getting into the airplane, and flying west at one thousand feet n the darkness, until I meet the mountains. I could not, of course, inflict that upon my family, but the idea that I might thereby join Lucas fills me with anticipation. I have had patients who have lost children and told me of a wish to follow them. Now I understand."

And finally, almost fifteen months after his son's death, Mr. Livingston writes:

"August 23, 1993
...Memory burdens me like an anchor I cannot raise. It was not always so. My few earthly attachments allowed me to move through the present without fear on the way to a future that held, I imagined, some perfect combination of peace and excitement. That is gone now. I am weighted by the past and advance only haltingly and with great effort toward whatever time is left-full of obligation, but without promise of the joy I so freely savored."

I have no doubt I will feel the same no matter what measure of time has elapsed. I only hope I am able to find a way to make it hurt less. I love you Nickolas, you will always be my best boy in the whole wide world. I love you more than a wagon full of puppies. Mom

"Angerversary"

One year ago today was "Day Zero" for Nick's bone marrow transplant. Today was supposed to have been a celebration of his one year anniversary of beating his leukemia. It was such a hopeful day...we wished with all of our collective hearts that this gift from a stranger would be the answer to our prayers for Nick. When I look back at my notes on this month from a year ago today, I find each day is filled with the steps of that journey. Now I look back with anger, sadness and shattered dreams. I cry every day and every night for the loss is so great I do not know what else to do. I straggle my way through each day, with mundane tasks taking my mind briefly away from the grief that I feel. I am on a different roller coaster now, where emotions rise and fall like waves crashing to the shore. Such a senseless loss will not be easily understood, nor accepted.
Last August seems so, so, so FAR AWAY! Today I had to go the funeral home to pick up death certificates for my first born son. How is that even fathomable? When I read the listed cause of death as "pneumothorax" it brings back all the horrible memories of that last week and those final days that are indelibly etched in my mind. I cannot forget and I still cannot forgive myself for failing my son. It makes me so very sad. It makes the memory of this day all the more difficult to bear. I remember how wonderful Nick was and what a trooper he was and how positive he was at that time. How were we to know the the magnitude of the struggle Nick was about to face, that the fight had only just begun and that ultimately the fight would be lost no matter how courageously we fought. It just breaks my heart over and over again. I love you Nick. I miss you every minute of every day. My heart will never be whole again. Today I got a card from Nick's pediatrician. It was so nice to hear from him and his memories of Nick. He was shocked to hear of Nick's death. He did not know he was sick. Once again, I cried sad and bittersweet tears. For there is no joy in my world right now. There is only the darkness left when the light of my beautiful son left this world.

“Anyone can become angry - that is easy, but to be angry with the right person at the right time, and for the right purpose and in the right way - that is not within everyone's power and that is not easy.” Aristotle
P.S. - Jack's Mannequin concert in Washington DC sold out before I could get tickets. Not happy about this...I really wanted to go to that concert. Oh freak!

Sorrowful Through Loss

I'd like to think that this was a road that Nick would enjoy traveling on, either by foot or maybe on that bike he was supposed to get when he was better. We are all still struggling day to day here. Nothing seems right. Nothing fits like it should. Sadness is the prevailing wind of the day. Nothing seems to ease the pain of this loss. We are all trying our best but it ain't workin'. When I read back on my blog, it only serves to make my heart break over and over again to see the level of pain and suffering that Nick had to endure over the last months of this illness.

Bereft

Alone on this one way street

No turning back now.

Hiding in the shadows cast by the pieces of my broken heart.

Keep moving. Don’t stop, lest you be consumed.

The muck seems somehow acceptable.

I no longer fear, the worst has already happened.

Sometimes there is pain so deep, a brief dose of reality.

Memories are no consolation.

There is no going back.

Dreamless sleep betrays me and brings hard truth.

I will never see you again. ~Big D

Eleven Days

I miss you Nick.
Every minute of every day.
Has it only been eleven days?
It seems like an eternity already.
I never know when the tears will come, brought on by some random thought of you.
A wound this deep will never heal.
How I wish I could see you again, talk to you again, see your smile and hear you say, "I love you Mom."
I miss you so.

Here is the link for Nick's obituary that appeared in the Baltimore Sun on Sunday, August 23rd.
Here are two Walt Whitman quotes that I like. I think Nick would liked them as well.

“I have learned that to be with those I like is enough.”

“Keep your face always toward the sunshine - and shadows will fall behind you.”

Eternal Mourning

How can I put into words what I am feeling right now? I don't think it is possible to make it clear how sad I am, how angry I have felt at times, and how lonely I am without my sweet boy. Today the "death notice" came out in our local paper. Nothing liking writing and then reading your own son's obituary to bring the day to a glorious close. Then I come home to find a letter from Johns Hopkins on the table. It's not a letter of apology for all their freakin' screw ups, nor is it a letter of sympathy or condolence from all the higher up mucky mucks who have charged the better part of one million dollars to fix Nickolas and basically failed miserably. No this letter was the "provisional" autopsy report and that to is full of inaccuracies and errors of omission with regard to factual data. The report at this point tells us nothing except that we have to wait three more months or so for the final microscopic results. I hold no hope that this report will end up telling us anything, which will only serve to make me even angrier that I consented to this procedure in the first place. The report contains phrases that mean nothing to me right now, but, they do not sound good. Phrases like "coalescing non-hemorrhagic yellow lesions with discrete borders" which were found throughout a good portion of Nick's lungs; or,
"multiple firm white fishflesh-like tumor infiltrates present through lung parenchyma bilaterally." Well isn't that just hunky-dory. It is also stated TWICE, not once, but TWICE that Nickolas "passed away peacefully." Who in the hell gets to decided this? What pathologist in what lab knows about this? They were not there...what the hell? AND...in addition where they list cause of death here is what is written. a)Pending b) Acute leukemia. Now I have to say that "B" is NOT the cause of death because Nick did not have any leukemia at the time of his death. So how can they write this?? They state that very fact that Nick did NOT have leukemia about five time in this very report. OMG! There are many things in this report that don't jive and I am not happy about it at all, so I guess on Monday I will be blasting someone in the pathology department.

I am only one of many who are missing Nickolas so much right now. All our our collective hearts are breaking. Reading these things today, well, it just makes me so sad and all I can do is keep asking myself why? Why do things like this have to happen to such good people? There are no answers I can give. There is nothing that will fill the empty void in my aching heart.

“I am troubled; I am bowed down greatly; I go mourning all the day long.”

“Melancholy is at the bottom of everything, just as at the end of all rivers is the sea. Can it be otherwise in a world where nothing lasts, where all that we have loved or shall love must die? Is death, then, the secret of life? The gloom of an eternal mourning enwraps, more or less closely, every serious and thoughtful soul, as night enwraps the universe.” Henri Frederic Amiel

Time Falls Away

Magpie comes a calling.
Drops a marble from the sky.
Tin roof sounds alarming
"Let this be a warning"
says the magpie to the morning.
Don't let this fading summer pass you by. ~Nickolas Pippen

I didn't sleep well last night. I was up to 0400. I don't know why. Before I went to bed I went into Nick's room and placed my hands on what is left of my son and cried and cried. Each day I move through the house searching for things that will keep Nick close to me...pictures, clothing, scraps of paper with his handwriting on them, anything that is a tangible reminder that he was here and he was our beautiful son. I thank God he had a little of that pack rat gene, for he has saved a lot of things that are sentimental mementos of his love for others and their love for him. I am haunted by doubt and thoughts of uncertainty. I often ask myself, "What have I done?" There have been no signs, no divine interventions, no miracle visions, no spirit horses riding through the sky. I do not often have dreams, but, the other day I dreamed (or made up in my head) that I was in the airport and I couldn't find Nick. I was distraught and crying, sitting there not knowing what to do when a soldier came up and asked me if I was alright and if I needed any help. I made it up in my head that Nick sent him to me. I found the poem above on the back of a random list in Nick's box of papers. The lyrics to this song were inside a card Nick had received from a true and loving friend. I treasure each new discovery and consider each one a special gift. What I wouldn't give to have my wonderful son back with me again. I love you Nickolas and I miss you so.

"You asked me what was wrong, I smiled and said nothing, when you turned around and a tear came down and I whispered to myself... everything is."

The Dark Things

Dreams In The Dusk

Dreams in the dusk,
Only dreams closing the day
And with the day's close going back
To the gray things, the dark things,
The far, deep things of dreamland.

Dreams, only dreams in the dusk,
Only the old remembered pictures
Of lost days when the days' loss
Wrote in tears the heart's loss.

Tears and loss and broken dreams
May find your heart at dusk.

~Carl Sandburg

Today has been a horrible day...I have spent so much time crying and grieving for my son. I have never felt such emotional pain. I want to thank everyone for their thoughtful wishes and support. I have no doubt I would not get through this without my family and friends to take care of me through this process. Today Nick was brought from Hopkins to a funeral home (by law the body of the deceased must make an appearance at the funeral home, no matter what kind of burial or funeral you want). I am having such a difficult time letting go of Nick's physical body. I had to see him just one more time. And so I did! And it was good! It was important to me to make sure that I stay with him right through to the end of this process (and I also wanted to make sure that all those damn tubes were taken out of him, and they were!) Glenn & I read him some letters that we wrote to him that we hope will soothe and comfort him. I gave him a card to take with him on his journey (and the letters) so he can read them again when he gets to his first happy place. At this hour, the cremation will be over and I will no longer have my boy to hold in my arms, to give me a hug, to dazzle me with that joyful smile, or to tell me how much he loves me. The pain of that loss is really quite unbearable right now.

Nick did not want a viewing in the traditional sense, so we are not having one. There are plans for a celebration of his life which is in the spirit of what Nick would want. There are NO set plans at this time, but, we are considering having something on his birthday of September 11th. I had hoped to get him to his one year anniversary of his bone marrow transplant and certainly to his next birthday. But, it was not meant to be. More importantly, I wanted him to be "better" on his birthday so he could really celebrate and return some normalcy to his life. I tried so hard to get him to his goal. He only just wanted to be better!!! Once again the "dark things" managed to steal this away from him and all of us. I HATE THE DARK THINGS! I know it will take time for me to get past the dark things and I am trying really hard to remember the good things. It is just that it hurts so much and I cannot bear it. I love you Nick...I miss you beyond measure.

Finally Free

On Thursday, August 13th at approximately 1750, I lost my beautiful son, Nickolas, to the lung complications of his bone marrow transplant. Words cannot express the grief and pain I am feeling right now. It was our decision to withdraw support and put an end to Nick's suffering. This was the most difficult and heartwrenching process I have ever had to go through. No parent should ever have to do this. Nickolas was a blessing in my life beyond anything words can say. I am in shock right now and cannot believe that this is real. I feel like I can't put a coherent sentence together. I cannot fathom how just hours ago my son was alive and now he is gone. Gone forever. I do not know how I will fill this void in my life. I have been missing him for days and I miss him now more than ever. To think that right now he is lying in a morgue in the basement of Hopkin's hospital, well, you might as well just take my heart and rip it from my chest. I will never be the same...this experience has forever changed me. I miss you my beautiful son, I love you with every fiber of my being. I pray to God you are now happy and free. I pray that the angels carry you to all those places you have been wanting to see and bring you all those foods that you have been wanting to eat. And most of all I pray that you are finally free of the burden of those lungs that have betrayed you at every turn. At long last you can breathe easy. Fill those lungs and scream out, "I'm free, I'm finally free." One night Nick had a bad dream and he woke up crying. I asked him what was wrong. He said, "I had a bad dream and I couldn't find you." I will always be there for you my sweet Nick. I will never be far and you will always be in my heart." God give me the strength to find a way to do this...my heart is broken into a million pieces.

Sunrise, Sunset

I guess somewhere in all this I forgot to mention that in the midst of all this hub-bub about Nick's lungs, the doctors kept insisting that much of the problem was related to Nick's "anxiety" about his breathing. I cannot tell you how angry this makes me. For the past two weeks or so, we (Nick, myself, the doctors, and Nurse Lovely, the psych nurse) have been going round and round over this issue. Nick & I have been adamant in believing that the "problem" is NOT Nick's anxiety, rather, it is now and has always been about his broken lungs. The doctors have been pushing this issue and in the process have had blinders on to any other symptoms. Nick was happy to talk with Nurse Lovely and so he did. Nurse Lovely agreed with us. Nick was not having any real symptoms of true anxiety and therefore, she was very hesitant to start any medication. Nick was going to think about his options and talk again with Laura early this week. Unfortunately, he can't talk to anyone right now and that is because THERE WAS AND IS SOMETHING GOING ON HIS LUNGS BIG TIME....i.e. - NICK & I HAVE BEEN RIGHT ALL ALONG. I had been asking about his breathing, his left chest looked slightly bigger than his right, the other day I had listened to his breath sounds and his left lung sounded terrible. I went out and asked Dr. Pulmonary about it. I told him it sounded a lot like when Nick had gotten the pneumomediastinum and whatever it was it did not bode well.

So anyway, today Nick went to get a CT scan of his chest. They found THREE HUGE pockets of air in his left lung. It is very unusual to have "pockets" of air like this. The air is called a pneumothorax, (different from a pneumomediastinum, although he has some air there too) and it's usually just a large collection of air. However, due to the scarring and adhesions from Nick having had two surgeries on this lung, the air is trapped in pockets with the adhesions acting like dividers. Normally, chest tubes would have to be placed to get this air of of the lung. In this case, this is not possible because all three of these pockets of air are inaccessible due to other anatomical structures in the area. Also, NONE of this air showed up on any chest x-ray that Nick has had in the past week or so! And to add a cherry on top...Nick has a new pneumonia starting in his right chest.

The thoracic surgeons who have mucked up his left lung and chest has already said they "can't do anything" for Nick. The interventional pulmonalogist has said that he can't do anything to fix this with 2D ultrasound guidance. That leaves the interventional radiology people. They will be letting us know what they think tomorrow. In the meanwhile, Nick remains heavily sedated and therefore, we hope is unaware of all that his going on for the time being. I am heartsick over this and I am so tired of having my hopes dashed to the ground on a daily basis. At first I was so relieved to hear that this might actually be something that could be fixed. It wasn't even thirty minutes later that Dr. Pulmonary came in and blew it all out of the water.

It has been another day of sadness and tears in imagining that our worst fears may come true here. I feel that we need a miracle to get Nick out of this. I don't know if they will be able to ever wake him up for the sedation. I don't know if I will ever get another smile, another hug, another kiss, another thought from this beautiful and generous young man. I don't know where I will find the strenght to continue on this journey, but, continue I must. I will keep everyone posted as best I can. Please keep praying for Nick.

Perfect Faith

"Still perching there, ready to take flight. Thinking grand thoughts of the new journey about to begin."
~BigD

This little fellow reminds me of the hummingbird calender that Nick has hanging in his room. Every day or so we change the page so Nick can have a new picture to enjoy. It is never on the actual month so everyone keeps trying to put it back on August.

Something to share...you know how you go in places like Cracker Barrel or Hallmark card stores and they have things with people's names and what they mean? Well I hope so because I have two cards with the name "Nick" on them. I just really like what they say and so I wanted to share them with everyone. The first is "Nick" from the Greek root Nicholas meaning "Victory of The People. Then it gives this description, I highlighted my favorite part:

"A frank person; someone who is shy until he gets to know you; he is proud of his old-fashioned ideas; can be lovable when he wants something; solid and real; has a divine nature; thinks for the benefit of the world; his reward in life is those around him." So true!

The second card has the following Bible verse: "But they that wait upon the Lord shall renew their strength; they shall mount up with wings as eagles." Isaiah 40:31

Nuts & Bolts of Monday...
a) Nick remains heavily sedated. Plan is to keep him this way in the short term in order to do more tests. Doctors are trying to figure out what is going on with Nick's lungs.
b) Nick's VS have been stable and his numbers continue to look good, despite the continued poor status of his lungs.
c) Nick ended up getting his trach tube changed out at the bedside (long story). So now he has a #8 trach tube. So far it hasn't helped anything.
d) Had a big meeting with the doctors, nurse from palliative care team and social work. The main thing that was established was that the doctors are not giving up on Nick. They are very concerned about these latest developments and want to do everything in their power to find what is wrong and try to fix it. Given that Nick has no leukemia and no GVHD right now, they want to be sure to give him every chance to "bounce back." So for now we are in limbo...it was also discussed that communication between us and the doctors needs to be better. (Understatement of the century).

Thank you to everyone for your well wishes, prayers, and words of support and encouragement. It is good to know there are so many people out there pulling for Nick. It means so much to us.
Please keep praying for the miracle that we need. I am trying to find solace in the fact that while sedated Nick is not suffering, but I miss my Nick and I want him to be able to come back to us soon. I miss his smile and I miss my "I love you Mom."

“The reason birds can fly and we can't is simply that they have perfect faith, for to have faith is to have wings” James Matthew Barrie

Air

I picture Nickolas like this one day; healed, free of the burdens he has been carrying for the past year, free of the pain, free of the bad dreams, free of lungs that betray him even as I write this.

I am sorry to say that Nick has taken a turn for the worse. Over the past few days his breathing "fits" have become more severe and more frequent. Last night was horrible. Nick was struggling to catch his breath, he felt tired and he felt like he couldn't slow his breathing. He was asking for medication to sedate him and take away the air hunger practically every hour on the hour. He cannot have the medicine this frequently so he would lie in silence, stoically trying to make through each torturous minute, until he could have the medicine and be put back to sleep. We have been telling the doctors about this since last Wednesday night. I cannot even begin to go into all that right now. Friday night I was at the hospital until 12:30AM trying to get Nick settled. On Saturday night, Dr. Frosty was actually the on-call fellow. I was so happy about this because I knew he would listen to me and I knew he would try to do something when he saw how hard Nick was having to work just to breath. And remember, this is all with Nick already on the ventilator.

They did a CXR which did not show anything. His monitor and respirator numbers did not show anything, and yet Nick continued to struggle to breath with every breath. They finally drew a blood gas and found that Nick's carbon dioxide level was very high. His venous CO2 was 70! His arterial CO2 was 62! Both very high numbers and his pH was borderline at 7.30 and 7.32. This number should be at least 7.35. Dr. Frosty had the respiratory therapist come in and make some changes on the breathing machine and then it was decided that Nick would get some mega-drugs to knock him out for the night and let him sleep. So last night he finally slept and I went home around 1Am to try and get some sleep. Pretty much every time I leave there at night I just cry myself all the way to my car. It is so hard to leave him like this, knowing that the least little activity could put him over the edge into another bad breathing spell that will make him air hungary all over again.

We then get a call from the hospital at 0730 on Sunday morning telling us that Nick had dropped his BP very low (most likely due to the sedation) and they had to give him fluid and put him on an IV drip to help his BP stay up. Glenn & I got up and headed for Hopkins. When we arrived Nick was actually awake but still very agitated, not able to breathe and asking for more medicine. It just breaks my heart to see him this way. I don't know what we are going to do. This latest round of breathing problems has really brough Nick's spirits down. He cannot focus on anything but breathing and trying to stay calm. I don't know WTF is going on with his lungs and apparently no one else does either. It seems he has been getting worse and worse with each passing day. Nick is not sure what to do either...when he feels this way, he doesn't want to fight anymore. He told us how tired he was and then he told us how he just wants to go home!! Oh my God what I wouldn't do to get him out of this place and bring him home where he could watch his birds, feel the sunlight through the window and just be home! It has been so long. I cannot believe that we have spent almost the entire summer in the hospital.

So on Sunday morning, the pulmonary doctors decide that one theory is that Nick's trach is too small and it needs to go up to a bigger size. Now he has had the #6 trach since it was changed on 7/23! Why now are we just coming up with this theory? I am once again not buying wha they are selling. But, once again, we are in a position where the doctors are trying to get Nick to try something with the hope that this will "fix" the breathing problems. HA!!!! If only it were that easy. There was no attending in house today (weekend...all work ceases until Monday) so Nick had to wait until Monday to go to the OR and get the trach sized up to a #8. In the meanwhile, they have put him on a slew of drugs to make him so sleepy that he doesn't feel anything or the air hunger feeling. They have him on Propofol (the MJ drug), Fentanyl, Ativan, and Haldol! All of these meds are being adjusted upward or downward depending ou what is happening with his level of agitation, BP, fluid status etc. It took most of the day, but he finally settled down to a place where his numbers are good. I am very upset at the rapid rate of Nick's decline. I am very upset and sad to have to go out and beg the doctor to come in an spend some time talking with me in order to learn about what is going on with Nick. His left chest sounds terrible with decreased breath sounds and lots of end expiratory wheezing. He is still gettinghis nebulize treatments, but, he gets them every four hours now.

After they take Nick and put in the #8, I am not sure what is going to happen. These questions are best left unaswered for now. All I know is I feel like all of our hopes and dreams for Nick's recovery are being sucked out of the vortex that is hislife right now. I am grieving for so many losses in Nick's life right now, I don't know how much more pain any of us can bear.

Nick is pretty much bed bound right now. He is on medications to numerous to mention. He had a fever two night ago, no one knows much about that either. All the promises that were made to Nick about speaking, eating, traveling, and being able to use the bathroom have proved to be empty at best and a cruel joke at worst. Glenn & I spent most of the day on Sunday having our hearts broken as we stood at Nick's bedside trying to cope with even the thought of losing this wonderful man with such a beautiful soul and mind. It is unthinkable and unimagineable and the pain is almost unbearable. How is it possible that this gets harder?

I am so tired right now I can't really even think straight. I keep falling asleep as I write this so I need to go to bed. I will try to update during the late afternoon or into the evening on Monday.

I know everyone has been storming Heaven with their prayers for Nick. Now more than ever we need everyone to pray for Nick's lungs to heal.

A Frail Branch

“We have not wings we cannot soar; but, we have feet to scale and climb, by slow degrees, by more and more, the cloudy summits of our time.” ~Henry Wadsworth Longfellow

All I can say is that Nick's fight continues. The last two weeks have been extremely tough. It seems there is ALWAYS some new twist of fate that must be dealt with in one way or another.
Despite three semi-"quiet" days, Nick is still trying to regain his balance on this precarious perch.
Nick remains on the ventilator. Nick's lungs have not really been stable enough to attempt any weaning. It is unknown at this time if Nick will ever be able to be off the breathing machine for any length of time. Most of the things the doctors told Nick before he got his tracheostomy have not even come close to being a reality, like speaking, eating, weaning off the vent, and/or any kind of activity. The doctors made all these things sound like they would be such easily obtainable goals. However, at this point nothing is "easy" for Nick. I am still hopeful that Nick will eventually make strides towards making some of these goals a reality, but, it will take lots and lots of time and hard work, if his body cooperates.

This admission, now going on sixty days, has felt to me like Nick has been caught in the eye of a storm. It is like when you are out in the ocean and you are trying to make your way to shore and you get caught in that place where you can't get in or out and the waves are coming too fast and you keep getting knocked down over and over again. At this point, you cannot think about anything except what it takes to survive in the moment. I am praying that Nick has finally been spotted by a lifeguard and dragged to the shore. Now perhaps he will have time to catch his breath, rest and heal. Only then will I feel like we can truly evaluate where we are, where we are going and how long it will take to get there.

Nick continues to battle an assortment of infections that are very worrisome. The longer Nick is in the hospital the more he is exposed to "hospital acquired" infections. He is currently being treated for the fungus in his lungs(Aspergillus ustus) and an assortment of bacterial infections including Staph epi, C. diff, Klebsiella, and Pseudomonas. Nick is still on a slew of intravenous medications to kill all these different bugs. He had fever as recently as several days ago and therefore, he has just been really wiped out. Nick still has a horse-size chest tube in his right chest necessitated by the doctors puncturing his lung during the thoracentesis that was done last week. This fluid was NOT infected after all, but, now Nick is having to deal with the pain of this tube while we wait for the lung to return to normal (which with Nick's lungs is always an iffy proposition at best). I don't understand what makes the doctors think his lung would just bounce back to "normal" when the lung was not normal to begin with.

Nick is also still having trouble with his feeding tube. He had to travel to east rat's ass to get a test to make sure the tube was in proper position. This required another transport by the purple team. Once again, Nick had some trouble with his breathing while returning from the test, but, I won't get into those details now. Suffice to say that the feeding tube was given the OK. Nick's tube feedings were restarted briefly, but, now his bilirubin levels have shot up and the doctors are concerned that he has some gall bladder/biliary malfunction going on so Nick is currently awaiting a liver ultrasound. Feeds have to be held for this test, so once again Nick is without the nutrition and calories he needs to fuel his body and his brain.

The day to day, hour by hour, experience of Nick's day is unimaginably difficult. Nick's body and mind need time to heal and repair. I know he is tired of being "sick" and he wants to be out of the hospital! Being in the hospital this long is like an anchor just weighing down the spirit and the mind and yet, Nick remains steadfast in his goal to get well. Every day I am trying to think of new ways to bring small joys to his existence within the four walls of his hospital room. He always brings joy to my life with his smile, his honesty, his bravery, and his beautiful soul. Despite all the trauma he has been through, there are moments I experience with him every day that remind me why I am so happy to have him in my life and I will thank God for every minute.

“Be as a bird perched on a frail branch that he feels bending beneath him, still he sings away all the same, knowing he has wings." ~Victor Hugo

Nine Lives

This past week has been so surreal. It has been so darn sad, pathetic, and filled with anger and frustration. It it wasn't so appallingly awful, I guess it would be funny in some dark gallows humor kind of way. It is just unbelievable sometimes how many things can go wrong for Nick. I really just have to wonder WHY some deity thinks this kind of cruel joke is even remotely humane! When will Nick ever get a break? When will the dice roll his way? After all this time, it is really hard to guage that status of your gas tank when you have no idea how far you will be driving or where the next gas station will be! I hope this makes some kind of sense...I am tired.

Here is a brief recap of the past few days:
Friday - travel to CT scan. Short of breath (SOB). Taken by purple team (Cowboys Fric & Frac) forget ambu bag and trach supplies. Nick with low oxygen and mild breathing difficulty while traveling.
Saturday - low keep day, but Nick not feeling so great. No energy, TIRED. Glenn & I go out to eat dinner - find out later that Nick had a "breathing fit" right after we let.

Sunday - Nick still not feeling well. C/O belly pain for past two days. Belly still hurting. Not tolerating tube feedings. Around 10PM, Nick got nauseous and threw up setting off an downward spiral into a serious breathing fit.

Monday - I am more than angry and I let the doctors hear it during rounds. They all seem unimpressed (yawn) and go about their day as if Nick didn't spend another night breathing fast and air hungry!

Tuesday - travel to CT scan AGAIN! Different purple team (Laverne & Shirley) take Nick down.
Nick doesn't tolerate the transport ventilator at first, but, then after a few tweaks on his settings and some Ativan, he is relaxed and the CXR is completed.

Wednesday - Bombshell #1 - Dr. Smith wants to start Nick back on Gleevac. HUH??? We were told that Nick would never go on Gleevac again because it wouldn't work for Nick. More discussions w/ doctor types tomorrow on this subject.

Bombshell #2 - the doctors have decided that the fluid in Nick's RIGHT lung may now be the problem. By CT scan, his right lower lobe is completely smushed by fluid. They want to check the fluid by doing another thoracentesis on this fluid.

Nick actually does very well with the procedure. The doctors took 300cc of fluid off of Nick's right lung. Then he has to have his second CXR of the day. Oops wait make that another CXR because no one can manage to get his lung lined up on the plate properly. ABSURD!

Bombshell #3 - the results of the CXR show that Nick now has a pneumothorax (a huge pocket of air in his lung) a complication of the thoracentesis! Basically, the doctor went into Nick's pleural fluid and went too far and hit the lung. Now Nick has to have a CHEST TUBE/DRAIN placed in his chest to get this air out! By the time the cardiac thoracic fellow arrived at the bedside, Nick was starting to have some signs of worsening resp distress.

The CT placement is quite a barbaric process. Nick got plenty of sedation medicine and yet he
was still very awake for the whole process. He tolerated sitting up for so lung and his breathing and sats remained stable. Nick was having a lot of pain around the site and into his back due the placement of the chest tube, but, he is using a pain pump which seems to be helping him. The doctors took off fluid to send for all kinds of tests and in the meanwhile the CT has drained more than 500cc. Hopefully, getting this fluid off will help re-expand Nick's right lower lobe and help his breathing improve. Getting this CT was very painful, but, Nick came through with flying colors. God bless this guy. I really don't know how he does it.

I know these past few weeks are really starting to weigh on him and I see his spirit starting to fade sometimes. I just hope we can give him what he needs to continue to carry him through this trying time. I can begin to describe how excruciatingly painful this process is for all of us...and I don't just mean physical pain...I mean emotional pain. I wish I knew what someone could do to help, but, I am too emotionally drained to figure that out right now. I just keep putting one foot in front of the other and moving forward. I don't know where we are going and I don't know what it will be like when we get there. The uncertainty weighs on my soul every minute of every day.

Please keep Nick in your thoughts and prayers. Thank you to those who have regularly been sending Nick cards. They really do brighten his day. I just think it feels like a tangible reminder that people love and care for him. If anyone else wants to send cards or letters, please mail to the house and I will be sure he gets them. Our address is 207 Haverhill Road Joppa, MD 21085.
It is late and I must go to bed.

Waiting For My Real Life

Dreams of walking on a beach,
Barefoot in the sand.
Sounds of sea gulls and waves rolling to the shore.
The smell of salty sea air.
Dark clouds follow in eerie silence.
Trying to stay a step ahead.
Remembering when walking was such a simple thing.

Nick continues to make a slow recovery from his latest surgery. His numbers are better, with his counts returning to normal levels. Nick has been without a fever for many days now...a good sign that the anti-fungals and antibiotics are doing their job. Wednesday should bring us news of the drug sensitivities for the fungus. Nick has not been feeling real great for the past four days or so. He keeps telling us he feels so tired and does not have any energy. He spends much of his time sleeping and trying not to have a "breathing fit," which can be brought on by anything and nothing. The breathing fits can be mild or quite severe, there is no predicting which it will be. His latest was last night when he became nauseous and then threw up some nasty brownish stuff from his belly. The tube feedings were stopped. Nick has been complaining about belly pain for approx. three days or so. The doctors had switched his stomach medicine, so I told them I wanted them to start Nick back on Protonix.

Nick's lung continue to be a problem, despite improvements in the CT scan post surgery. Why Nick continues with the breathing spells is hard to say. Is this just a continuation of his original lung problem or is he still fighting the fungus and the bacterial infections? Nick remains on the ventilator via his tracheostomy tube and it is yet unknown when he will tolerate weaning of the vent settings.

Nick's left arm has been extremely swollen. After bringing this to the attention of doctors, they wanted to attribute this to the dependent edema he has been experiencing in all of his extremities. They did get an ultrasound of his arm and neck anyway and it was discovered that Nick has a clot in one of his arm veins on that side and that is why his hand and arm are so swollen. The clot does not completely block the artery so for now the plan is to monitor, use warm compresses and elevate.

Nick's poor body is just covered with bruises and an assortment of wounds. Some are healing and some are not. He still has his PICC line in his right arm and an arterial line in his left arm.
He hasn't been able to tolerate his tube feedings. Nick threw up yesterday and then he had a breathing fit that was quite difficult to break. After getting some sedation medicine, Nick was able to calm down and go to sleep. I was very worried about Nick and I did not want him to be alone, so Glenn came down to spend the night and I went home around 1:30AM. We are both very tired and I need to go to bed now. The main thing that has helped is having some really wonderful nurses taking care of Nick on a somewhat consistent basis of late. Having someone who know Nick and cares about him make all the difference in the world. This gives me great comfort when I have to go home and leave my beautiful son in the care of others. I pray for God to guide their hands and their hearts and give Nick comfort through the night. I hope this is not to disjointed, if so, I apologize in advance for I am too tired to redo. Goodnight all.

Puppy Dog Tales

This picture reminds me of two of the things that Nick has really been wanting to do. The first is going to the beach and the second is getting a puppy one day. It illustrates how are hope for the future can sustain us even through some of the darkest times.

Nick has managed to come through this latest assault on his body with flying colors. Last night was really tough to see...Nick's left side is once again all bandaged and bruised with not one, but two, big chest tubes coming out. The first night post-op Nick slept. They have him on a pretty good dose of pain medicine, so he was able to sleep most of the night. He had to get some platelets and some blood, but otherwise, things are going OK for now.

Yesterday (Thursday) Nick was much more with it and able to communicate with us via pencil and paper. Early this morning, the Ear, Nose, & Throat doctors came in to do Nick's first trach change. I was not there, but, it seems things did not go according to plan. The doctor who was doing the trach tried to change it out to the current size (#8 ), but, instead they had to go with a smaller size, because they couldn't get the #8 back.

Nick's surgery went as well as can be expected. They were able to clear out all the pleural fluid.
They took about one liter of fluid off his lung. They also opened up his old lung biopsy site and found 300cc of fluid which they also removed and then packed this wound and left it "open" so it would heal from the inside out. The main problem now is that the left lower lobe was supposed to re-expand on it's own after this fluid was removed. However, so far, Nick's left lower lobe is not opening up despite numerous attempts to get the lung open in the OR. On Thursday morning, Nick's CXR did show some improvement in this lobe. The doctors are taking a wait and see approach, hoping that the lung continues to open up and re-expand on it's own. If it does not, I don't think there is anything they can do.

In the meanwhile, Nick seems to be rebounding with his usual alacrity. He is an amazing guy and I am proud to call him my son. I must go to bed now. It has been an exhausting few days tacked on to an exhausting few weeks. I am not sure where all this is going, but, I am too tired to ruminate on it now. If only puppies on sandy ocean beaches could make it all better.

Crazy Cat

After a long day of endless waiting, the nurse came in to let us know that they were NOT going to be doing Nick's lung procedure today. The OR was so busy they would have been calling for Nick possible as late as midnight, not to mention the fact that the surgeon, Dr. So and So, would be VERY TIRED at this point. Although I am not happy that Nick had to wait all this time and without food (as he had been NPO since 12MN last night), I would rather have them start fresh in the AM! We still don't know the exact time that Nick will be heading to the OR, but, it will hopefully be at a more decent hour. I am also glad that Nick has a little time to regroup as this morning was very rushed and stressful for him.

First the X-ray people came in and woke him up to do a chest X-ray, which sent him into a breathing fit, which is never good. He usually has to have some sedation medication to keep him calm when this happens and it takes him a long time to settle out after this happens. Then right on the heels of this episode the thoracic doctor shows up to try to get a consent signed for the procedure. Of course, he is in a hurry because he is coming up between OR cases and cannot really spend a lot time talking to Nick and/or answering questions! Also, most of these doctors are not allowing enough time for Nick to communicate his questions etc. since he insists on writing everything out on a pad of paper. I am not sure why he doesn't type on the computer, but, so far he has not wanted to communicate this way. Ultimately, Nick signed the consent, but, he does not like to be rushed and likes to spend a lot of time thinking things through and considering all the angles. This is the curse or the blessing of his engineer's mind. I personally thing it is a good thing, but, sometimes too much thinking can delay much needed treatment.
There is definite sense of urgency to everything around here, sometimes justified, sometimes not. The doctors basically want to do most things on THEIR schedule, not ours! Tonight is a classic example. When Nick wanted to wait until tomorrow everyone was jumping up and down on the furniture and nagging Nick about how crucial this was that he do this today....once the consent is signed, then it becomes a huge game of "hurry up and wait!" And I mean wait!! Then irony of all ironies, the surgeon cancels and now all of a sudden it is OK to wait another day!!!

So for tonight I feel like we have gotten another reprieve. Nick has actually perked up a bit this evening. For some reason, he usually feels better in the evenings. They started him on another antibiotic earlier today for a possible bacteria growing in the fluid they took yesterday. Nick's fever has gone away since then!! I was hoping that Nick would have one of his favorite nurse's again tonight, but, alas she does not seem to be here. Of course, he has a nurse who doesn't really know him that well, but, he is a nice guy and he has had Nick way back in the day. I find it is so much easier for me to get out of here and get home to rest when I am confident and comfortable with his night nurse! I hope to be heading home soon and try to catch up on some much needed rest so I will be ready for another day of ramped of stress hormones tomorrow.

Please keep Nick in your thoughts and prayers. It is good to know that we have so many supporters out there ready to come to our aid whenever needed. I hope you all will be ready when we call.

Neither Out Far Nor In Deep

Nick 's time in the hospital continues to filled with rough waters. On Monday, Nick had to have another test done to see if the fungus is growing in fluid which has been hanging out in his lungs since the lung biopsy on June 19th. The test is called a "thoracentesis." It is done at the bedside by the pulmonary doctors with the aid of an ultrasound machine. They locate the fluid with the ultrasound and then they stick a needle into the lung space between the ribs on your back! As horrible as this sounds, Nick did really great and he didn't even feel them sticking him with the numbing medicine. They gave him some sedative to help him stay calm. My biggest worry was actually getting Nick into the position for the test and fortunately, he came through this with flying colors.

After taking off enough fluid for testing, cultures etc. the doctors came back to tell us that this fluid is most likely infected. The only way to get is out at this point is to take Nick back to the operating room and have them clear out the "pockets" of fluid that are in his left lower lung. Usually, the fluid is not in pockets and it could be drained with a tube inserted into the pleural space. However, because Nick's fluid has "walled itself off" (a natural response of the body to keep badness away from other vital organs, like the lungs) the fluid cannot be drained this way.
The plan is to take Nick to the OR tomorrow sometime. He will have to have the same type of scoping procedure he had when they did his lung biopsy. He will also have a chest tube again and most likely some kind of drain into the chest cavity to keep the fluid from coming back again.

It is pretty much a month since Nick's lung biopsy and yet it feels like it was just yesterday. Nick has continued to run low grade fevers for the past few days and he hasn't been looking or feeling real great. Nick has been trying so hard to get his energy back and focus on his physical therapy goals, the speaking valve, and trying to learn how to eat again. But, everything has been thwarted by this infection which is sapping his strength and is of great concern to everyone. The tests on the fungus are not back yet (they had to be sent to Texas to do the testing). We are all awaiting the results of the sensitivity testing as this will tell us if the medications we have Nick on will actually KILL this particular fungus! It is called Aspergillus ustus and it is VERY RARE!

I am exhausted right now, so I must go to bed. I will try to post tomorrow to let everyone know how things go in the OR. The surgeon is very concerned specifically about the risk of bleeding. Nick's counts have been very low again. His marrow does not seem to be making platelets, WBC or RBC's right now. He must be transfused regularly for platelets and RBC's every couple days or so. Please keep Nick in your prayers today as he continues to fight so valiantly.

Neither Out Far Nor In Deep by Robert Frost

The people along the sand
All turn and look one way.
They turn their back upon the land
They look at the sea all day.

As long as it takes to pass
A ship keeps raising its hull:
The wetter ground like glass
Reflects a standing gull.

The land may vary more:
But wherever the truth may be--
The water comes ashore
And the people look at the sea.

They cannot look out far.
They cannot look in deep.
But when was that ever a bar
To any watch they keep?

Ledge of Sanity

As I sit here at my son's bedside, he finally sleeps. It has already been a long week and we are all tired. Tired of tests, procedures, medicines, lab draws, bad explanations that often preface bad news. I for one am so tired of watching this process pummel the life out of my poor battered and bruised son. His body literally looks like a punching bag. The past five days have been emotionally and physically exhausting and I don't know how a mother is supposed to be able to watch her child go through this much suffering without losing one's mind. The weekend past was very rough on Nick. He had several bad breathing "fits" even while on the breathing machine. On Saturday night, he felt better and we were able to "talk" for a good while about the doctor's recommendation that he get a tracheostomy and a feeding tube placed.
Now when I say talk I mean, I talk, Nick has to write every thought and word out on paper. Because Nick had the breathing tube in his throat this makes takes away your voice and you cannot speak. At the end of the night on Saturday, Nick had decided he wanted to go forward with the trach and PEG tube procedure.

On Sunday, he had a terrible day and had to go back on heavy sedation to keep his breathing comfortable. Later that evening he woke up and expressed how horrible it was to not be able to breathe! Despite having some second thoughts, Nick still expressed that he wanted to go forward because this was the only way for him to "get better." My heart aches when I hear this because Nickolas has been fighting SO HARD for SO LONG, I just want him to be able to have some joy in his life. I just want him to see some return on all that he has given up and believe me, he has given up so much! With each passing day, we are forced to revise our expectations in directions we never thought we would have to travel, because the alternative is really not all that appealing. And trust me, that alternative has been discussed way to many times as well. A mother should not have to discuss this sort of thing with her twenty-six year old son.

So on Monday, Nick had a bronchoscopy done (this is the third one to date), a percutaneous tracheostomy and a feeding tube placed at the bedside! Nick tolerated all these procedures and slept most of Monday night. On Tuesday, he awakened and could not remember even having the stuff done! Tuesday was a day of reflection with a tough dose of reality thrown in for good measure. Nick seemed OK, but, quiet. It was and is wonderful to finally see his face again. No tape, no big old tube hanging out of his mouth, no green oxygen mask...just our Nick with his wonderful smile. It is almost like making a deal with the devil...I will give you his face and his smile, but, I will take his neck and make a hole in it, put a big white tube in it and now he will breathe from here. Nick will have to have a special speaking valve in order to talk and he will have to learn how to talk with this valve. It is yet to be determined if he will be able to successfully talk. There is a lot involved in learning to talk when you have a tracheostomy and lungs that are not in tip top shape. Before he can eat again he will have to be able to tolerate the speaking valve. Long story for another day.

On Wednesday, Nick did not look or feel very well. He started with a fever and was breathing fast all day. His heart rate was somewhat high whether from the fever or the extra work of breathing. Nick once again has a fungus in his lungs. It is a resistant strain called Aspergillus ustus and they are treating it with anti-fungal medicine in the IV. They have had to send the fungus away to TEXAS to find out what specific anti-fungals will actually kill it. Now we must pray that there is a medicine that will get rid of it. In the meanwhile, Nick still has some fluid on his left lung, although that seems to be stable. The worry is that this is also a source for infection to grow. The doctors were considering sticking a needle into his lung to get some fluid to test for bugs. but, changed their minds for the moment.

The feeding tube was placed in his belly to allow for tube feedings to happen while Nick's trach site is healing. He can't eat normally for at least a week to ten days. After that, if all goes well, he must learn how to eat and breathe at the same time. Nick is tolerating the tube feedings so far...but, he now has an infection in his gut called C. difficile. He has had this before and he will have to be treated with antibiotics in the tube for a while. This bug comes out when you have been getting antibiotics for a long time. Your body loses all the good gut flora that would normally fight off this kind of bug. So frustrating!!!!!!! The doctors think the fever may be related to this gut bug so the hope is that he stops having the fever when the new antibiotic kicks into gear.

Today....Thursday, July 16th has been a better day. Nick's fever seems to be gone for the moment. He is tolerating his tube feedings...like liquid MRE's (disgusting stuff), but, Nick is badly in need of nutrition and it is always better to "feed the gut" than to go on IV nutrition, so for now, this until Nick can eat, this is what is best for Nick. Improving Nick's nutritional status is KEY factor in promoting Nick's recovery. They have also significantly tapered his steroids as they are one of the main culprits in the massive muscle wasting that Nick has right now. PT is coming to work with him several times a week and Glenn and I have been "working him out" as much as possible. Nick is still so very weak and it is going to be an extremely SLOW process for Nick to get back to some sort "normal." Despite all that has happened, Nick remains strong, patient and loving to all. He has an indomitable spirit that is both inspirational and daunting in its power. He faces each challenge with a thoughtful and analytical mind. The resilience of his body and spirit are an amazing testament to the power of mind over matter. Today Nick has had a good day. He even spent some time teasing his sister and giving his nurse a hard time.

I will have to talk about other big picture issues later. Right now we are all still digesting this new reality and taking it hour by hour, day by day. I am afraid to look too far forward. It seems we are always clinging to one loose rock or another staring into an abyss of the unknown; never knowing when another danger will arise and attempt to peel our shaking fingers off this precariously established ledge of sanity. No one is sure what Nick's baseline will be regarding his lung status. There are so many other variable complicating the picture right now we will have to wait and see. It is possible that Nick may need the ventilator to help him breathe all the time. The hope is that he will be able to get rid of all his infections, get stronger, and be able to wean of the vent, at least during the daytime hours. He might need to sleep at night with the vent to help him rejuvenate and save his energy for breathing during the day. I am trying to remain hopeful. Nick wants to keep fighting and so we will remain steadfast in our determination to stand right beside him every step of the way!

“Do not let loyalty and faithfulness forsake you; bind them around your neck, write them on the tablet of your heart”

“Loyalty is still the same, whether it win or lose the game; true as a dial to the sun, although it be not shined upon.” Samuel Butler

Broken Wings

The small bird sat on my window sill.
He seemed alert and bright.
He sang a song of moon lit skies and journeys to far away places.
It was only when I looked more closely that I saw the sadness in his eyes.
Who will mend his broken wings?


Decisions looming.
Heart aching.
Life spiraling out of control.
Descending into madness.
Surreal days blur into nights of endless tears.
Battered and bruised.
Hope bleeds into the dirt.

Holding On To Dreams

Still reaching for that brass ring, today was a very rough day. Nick was not doing well this morning and the doctors were concerned that he would "tire out" and have to go back on the breathing machine. Nick was pretty adamant that he did not want to go back on the breathing tube.

The doctors were suddenly on top of getting the neurology doctors to come and give Nick an exam. We had about a bazillion doctors at the bedside talking loudly and seemingly ignoring their patient who lay in bed breathing for his life.
Long story short, it was decided (FINALLY) that there might actually be something else going on that is impacting Nick's ability to breathe effectively. They think he might have a neuromuscular disorder, specifically Guillen-Barre syndrome. Nick will be having quite a few tests in the upcoming days. I pray that they find something they can fix!

Nick is now back on the vent. After listening to doctors all day and meeting with Dr. Frosty, Nick changed his mind. I am not sure how I feel about this decision, but, Nick & I were able to talk about it briefly. Nick was comfortable with a set time frame in which the doctors will try to find out what is wrong and if things are not moving forward the tube will be taken out. I will try to give a better explanation of thing tomorrow. For now, I am exhausted and must go to sleep.

A man's dreams are an index to his greatness. ~Zadok Rabinowitz

I have learned, that if one advances confidently in the direction of his dreams, and endeavors to live the life he has imagined, he will meet with a success unexpected in common hours.
~ Henry David Thoreau

Where Are The Stars?

Yesterday was a wonderful day for Nick (after a rough Day #1 with tube out). He seemed to have renewed energy and focus, although his breathing has returned to the labored and difficult pattern that he had before we took the ugly detours of a lung biopsy and the PRES. Nick wanted to see the fireworks and apparently he has won the hearts of his nurses here on 5B for they made it happen for him last night! They arranged to have Nick moved in his bed over to another wing of the fifth floor where the view of the fireworks was first rate. Nick seemed to get a big kick out of the whole thing. He was very quiet but happy to be spending this fourth of July watching some wonderful fireworks from Baltimore's Inner Harbor.

Today has not been so good. I arrived to find that these foolish and idiotic people were once again insisting that Nick get out of bed!!! The nurse in following orders made every effort to let the doctors know that this might not be such a good idea, but, the doctors still were adamant about Nick getting up. Now if I had been here he would not have done any of what I am about to describe to you. And of course, Nick is also complicit in this whole process because he has been wanting to get up and use the bedside commode for days now! However, apparently in this Nick has lost a few marbles because his lungs are not ready for him to be "getting up." Most of the nurse to date have outright refused Nick to use the bedside commode because he is way too weak to even support himself to stand and transfer to a chair or a commode, even with assistance!! They basically told him NO and put his butt on a bedpan. Not so for today...I am so ANGRY I COULD JUST CHEW NAILS AND SPIT RUST!

So when I arrived with Aunt Barbara and sister Sara...Nick was lying in his bed, breathing hard and fast, his color was shitty and his sats were borderline. At this point, the nurse explained to me what had gone on and suffice to say, Nick never got to the bedside commode. He only got as far as sitting on side of bed when his BP shot up, his sats dropped, he got anxious and had to have some Ativan (sedation medicine) and this episode has basically TRASHED the entire day!

Nick has spent all day breathing fast and on 80-100% oxygen trying to recover his VS and his sats. He has not been able to eat anything because his work of breathing is just too labored. Eating for Nick became more difficult when we were home several weeks ago. We all noticed that whenever he would begin to eat he would have increased breathing rate, increased effort to breath and would require increased oxygen. So this is not new...it is just worse. Nick had decided he would eat after they got him out of bed, well, that all went right out the window and another day has gone by without any calories passing his lips. While he was asleep Nick went into his "normal' funky breathing pattern that he has been having for months now...the nurse and the doctor were getting worried that he would "tire" out and they tried him on a BIPAP machine. This is a huge mask that they strap over your face and tighten on with Velcro straps. Nick was so sleepy, but, he said he would try it...well, HELL TO THE NO that did not work at all. His BP shot up to 180/120 and his sats dropped and he got all agitated and we took it off!!

Right now it is about 2100 hours and Nick is finally resting comfortably!! He is back on his regular mask and his sats are good. The night nurse (who I really like a lot because she has a lot of ICU background and experience) is slowly weaning his oxygen back down. Nick is sleeping and seems very tired, so I hope to God he doesn't get too tired tonight. I am so mad that these stupid doctors don't get it!! Tomorrow they plan to try to do more tests and continue to try to figure out what is going on with my poor boy! Meanwhile, all his precious food that he ordered continued to get delivered to the room and sits there uneaten, a horrible reminder of just how sick Nick continues to be. When he gets like this he completely loses any appetite he had and there is no way he can eat anywhere near the amount of food he has ordered. The let down from the initial elation over getting him off the breathing machine was rough for all of us and especially for Nick. It was like we all just wanted to pretend for a while that some kind of magic happened and his lungs were all better.

I am not sure what is going to happen. Nick has been so fatigued...even to talk is work. If it came to being intubated again, I don't know what he would want. I asked him and he said he didn't want to go back on the tube...but, I don't think he can think clearly right now on what that would mean. I don't know what to do. I will keep fighting for him no matter what. I keep telling the doctors that time is of the essence and they are wasting plenty of it! Nick has been here for three days with nothing going on because of the holiday weekend! It is just like when we are in the outpatient area, if your not sick enough to be admitted to the hospital nobody does anything. And now, it seems like unless there is an emergency, things here will continue to move at a snail's pace. The nurses have been wonderful here. They all love Nick and want the best for him.

Please keep Nick in your prayers. Even though he is off the tube, he is not strong enough to have visitors. Facebook, email, and cards are the best for now. When he does feel a little better, he usually gets on the computer and he does enjoy getting fun mail. Most of his mail these days consists of bills from John's Hopkins! If everyone could send Nick a card or two with some encouraging words, thoughts, and prayers, I know he would like that a lot.

When sorrows come, they come not single spies, but in battalions. ~William Shakespeare

When it is dark enough, you can see the stars. ~ Ralph Waldo Emerson