"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

Simple Gifts

Finally...some good news!! Nick was able to get his breathing tube out today. He is back on his oxygen by high flow face mask @ 50% and I am cautiously optimistic that he will stay off the tube. Nick is awake and alert, but, he is a little bit sleepy this afternoon. After all that has happened to him in the past two weeks, I am amazed at his ability to bounce back seemingly unscathed. Nick's main goal right now is to eat! Alas, they won't let him have anything other than ice chips for the next 24 hours. Then tomorrow he must have a swallow study to make sure he is able to swallow properly. It would be very bad for Nick to choke on any food or liquids right now. If he were to "aspirate" anything into his lungs that could be a huge setback for Nick. So while he is none too happy about this "rule" it is safer for him to wait.

I am enjoying the hell out of this day and I am so happy that Nick has been able to summit this latest mountain! There is much work ahead, but, I know he will be up for the next peak once he regains some strength. My biggest worry is how his lungs will tolerate activity. Nick is very weak and his muscles have wasted away even more, if that is possible. The doctors have begun to taper his steroid dose, but, this will take quite a while as he has been on the steroids for many months. Unfortunately, the steroids contribute to the muscle wasting. I am very concerned about the level of weakness that Nick has right now, especially in his legs. I am not convinced that this is all related to recent events. I am withholding judgement for now, but, I just have a feeling about this.

The "new" set of doctors have been conspicuously absent. On July 1st, all of the interns and residents, and fellows start new! In addition, a new attending started as well. So basically there is not a single doctor here who knows Nick at all! Talk about frustration! And they don't really come in and get much information from us...I mean, really, what would we know? So I have been on guard duty at the door. Usually I have to filter everything through the nurses who come in with the doctors crazy orders and then send them back out to discuss with the MD's who can't be bothered to come in and talk to Nick or me. For example, the attending Dr. Wow, came in to impress upon Nick the importance of getting up, getting out of bed and doing physical therapy. Now, Nick is fully aware of the importance of all these things. However, my question is, has everyone forgotten that Nick's lungs are still not fixed? And, no one knows what is the matter with his lungs? Dr. Wow told Nick that "they" were going to turn him into an ATHLETE!! I was like....really?? REALLY!!! Can't wait to see that, hey, I'm all for it. Good luck with that....last time I checked functioning lungs were a pretty basic requirement for athletes!

None of these doctors even has a clue of Nick's condition over the past six months and more importantly over the past few weeks....for example, starting with his admission on June 5th! Since being admitted on June 5th, up until Nick's lung biopsy on June 19th, Nick had only gotten out of bed three times! That's like one time/week. Now why do they think that is?? Not because Nick doesn't want to get out of bed! Breathing and oxygenation are things we take for granted every day. We don't think about it, it just happens. I noticed that when Nick was on the breathing machine (when he was awake), his breathing was so comfortable for him that he almost forgot he was on the vent. I think that is why his energy level was so much better and his appetite was back, because he wasn't constantly worried about how he was going to maintain his breathing and he did not have to fear having a "breathing fit." I am not sure what all this means right now...I am going to see how things go. I would like to think that Nick was all better, or somehow through all of this Nick's lungs were miraculously fixed, but, I know that this will most likely not be the case. To have these doctors come in and act like all Nick needs is a good rehab/workout program is just ludicrous. If that was all Nick needed to do there would be no doubt he would be kickin' some serious John's Hopkins butt right now. Please continue to keep Nick in your prayers. After all this, we still do not know what is wrong with his lungs. I can only pray that the more time passes, perhaps his lungs will wake up and start working right of their own accord. For now, I will take the blessings that have been given, more time with Nick!

I used this picture of Nick and Kate camping because it reminds me of happier times and the joy in simple things, like campfires, roasted marshmallows and sleeping under a starry night sky.

Balancing Act

“Perhaps our eyes need to be washed by our tears once in a while, so that we can see Life with a clearer view again.” Alex Tan

Life is a precarious balance right now, one misstep and everything may come unraveled. Nick is still on the breathing machine, but Monday was a quiet day and there were no untoward events. Nick had another chest CT scan done on Monday. The critical care transport team took him to the Weinberg scanner (not the one that is a mile away) and Nick did very well. Nick has actually been very awake, despite getting mega amounts of sedation. He is not always able to remember everything, but, he is able to comprehend very well. Nick has been communicating by writing on a pad of paper. This takes a lot of energy and time but he's doing it. He is fully aware that he is on the breathing tube but he doesn't understand everything that has happened in the past five days that have led him to this place. At times he wakes from sleep and he is confused and a little dazed, but, it doesn't take long before he gets oriented and is calling for his pencil and pad. He actually wrote the he wants the "full run down" on the last few days...I told Nick that I will gladly fill him in when he is off the sleepy medicine so he can actually remember what I tell him. And there is so much, it is just too overwhelming to hear while you are loopy on meds that won't let you remember.

The CT scan did show an area of schmutziness in the right lower lobe. This could be infection or old junk that is stuck down there. So tomorrow the pulmonary doctors will be looking down into Nick's lung with a scope to see if they can get some of it out of there to open up this lobe of the lung and send specimens for testing. This could be what is keeping Nick from getting off the ventilator. My theory is that when he had the seizure he aspirated into his lungs and that has now turned into a pneumonia. Regardless, if it is a pneumonia, they may be able to get more specific on the type of bug that is causing it and treat it more aggressively. This bronchoscopy will be done in Nick's room and should only take twenty minutes or so from start to finish. The doctors don't seem to be too worried about Nick undergoing this test, I hope and pray they are right. I guess there is a chance that they might try to get Nick off the tube tomorrow, but, it is too early to tell yet. We will have to see how things go with the bronchoscopy procedure. What they find and how he tolerates the scoping will determine how fast things progress going forward.

In the meanwhile, Nick has been talking about all the food he wants. He has been writing so many things that he wants to eat like doughnuts (from Fractured Prune), coffee, oyster stew (who knew Nick liked oyster stew??), Chipotle and more. Tonight, it broke my heart (and made me cry all the way to the car) when I had given Nick a kiss and said good night when he signaled that he wanted to write. He asked me to bring him an "everything bagel" for the morning. I guess he forgot that he can't eat while he has the breathing tube in and I guess he has had it for so long, he is almost used to it in some crazy way. It is so sad...cause in a way, I think the ventilator helps him breathe easier and he is feeling hungry, and he is on a bunch of loopy medicine, so it makes perfect sense for him to be asking me to bring him some breakfast food. And it makes me so sad that I can't do that for him right now. Soon, please God, soon.

It is late and I must go to bed. Tomorrow will be another long day. I just wanted to let every one know that Nick is still fighting! He seemed in a little better place emotionally, although, I can tell he is still very anxious and still very tired of this whole breathing tube thing. I will try to update again soon. In the meanwhile, thank you to everyone for you continued prayers, support and good vibes. I had some wonderful moments with Nick today. I am thankful for every moment I get to spend with this wonderful man who is my son.

“The greatest pleasure in life is doing what people say you cannot do.” Walter Bagehot

Holding Tight

Nick has been wanting to return to the beach for so long now. I chose this picture to remind me of the future we hope to spend together.

Yesterday (Saturday) started well. Nick was allowed to come off some of his sedation in hopes of taking the breathing tube out. His blood gasses were good and he was able to stay very calm while they did all their testing to see if his lungs would tolerate having the breathing tube out. His CXR showed that his right lower lobe had re-expanded and all seemed right with the world.

Despite the massive quantities of sedation medicine, Nick was able to open his eyes, nod his head in answer to questions and even write his needs and questions on paper. He seemed to understand that he was back on the machine, but, of course, he did not understand why or what happened to him. Nick was listening to some of his favorite music, the one I just put on my playlist by Old Crow Medicine Show is one he really enjoys! He was able to communicate with me and he knew when his Dad and Kate arrived later in the afternoon. He occasionally got frustrated when we could not figure out what he was trying to explain. While it was wonderful to know that our Nick was still alive and well after the seizures and the Tacrolimus toxicity, I could also tell that he was very sad and upset to be in such a helpless position. To see him suffering this way, well, it just broke my heart into a million pieces.

Suddenly it all went sour and for no reason that anyone can figure out Nick's oxygen saturation levels started to drop. At first, the sats were in the 89-92% range (normal is 97-100%) but, the number began to plummet downward and soon Nick was feeling that he could not get enough air and began to get anxious. I cannot tell you how many times Nick has had to go through this horrible experience, but, it has been WAY TOO MANY! The only way I can describe is to say that it is terrifying not to be able to get your breath and it is heart wrenching to watch this happen to anyone, let alone your child. As Nick's sats continued to drop, the doctors and nurses hurriedly started to sedate him and try to get oxygen in him via the ventilator and then through bagging with an ambu bag. Nick's sats dropped so low, I was terrified we were going to lose him right then and there. He was already on 100% oxygen at this point and his lungs were not bouncing back. His blood gasses were very bad, but, somehow his heart rate and BP remained stable and his blood pH did not drop too far. It took the better part of two hours for Nick's sats to return to normal.

A CXR showed possible worsening infiltrates and/or an inflammatory process?? It may be that he has an infection and/or something called ARDS (acute respiratroy distress syndrome). Whatever it is...it is not good. I have shed so many tears, the depths of my sadness cannot be measured. Glenn & I tried to stay at a special housing unit that is right across from Weinberg, but, there were no rooms. So Glenn is spending the night and I came home. I am praying that I do not get a phone call in the middle of the night tonight. I don't think I will be able to bear it if anything happens to my precious son. Everything brings reminders of how much he has been through and how much I love him. I cannot begin to describe the despair that I feel at this moment. All the hopes and dreams we have been holding onto so tightly seem to be slipping through my fingers like grains of sand. Sand from that beach that seems like a memory from so long ago, I don't know how we will ever make our way back to the place in time.

Testing of Faith

Hello everyone...sorry that I haven't posted in a few days, but, things have been very busy and yesterday Nick took a sudden turn for the worse (seemingly out of the blue, but, not really.) I put this picture up to remind me that this is the Nickolas I am fighting for every minute of every day! The handsome, healthy, strapping young guy with the content smile on his face. It breaks my heart every day to see the shell of his body that is left to continue this fight. But, I know his heart and his spirit are still in there...and I will fight for him when he cannot.

I will put the bad news out here in short form...if you want details read on. I know I can be long winded, but, it also helps me to have somewhere vent. So if you don't want to read all that stuff
you can just stop and wait for the next update. Nick started having seizures yesterday! He had several episodes of "mild" focal seizure activity, which prompted an emergency jaunt to CT scan, which showed nothing! Upon returning to his room, he had another episode. During the seizure, Nick wasn't breathing well and he was had to be prompted to breathe. His heart rate dropped a couple times and his color was horrible. The doctors INSISTED HE GO TO MRI, despite my STRONG objections and feelings that he was not stable to travel to the MRI scanner which is about a mile or more from the Weinberg building. I wanted the "critical care transport team" to take him and this team was not available at that moment. Instead of waiting, the doctor decided that Nick should go down to the bowels of the earth with a resident and a nurse who was the "shift coordinator." Glenn went and carried equipment that I asked to be brought (like suction and emergency bag) and I went, unfortunately as the second nurse, bed pusher/puller, elevator holder, monitor watcher etc. Upon arrival at the MRI scanner, Nick began to have another more serious seizure! This was so scary and horrible to watch! They had to give him Ativan to stop the seizure and then his breathing got so low....soon the CODE TEAM was being called. The anesthesia doctors decided it was necessary to put the breathing tube back in due to Nick's extremely low ventilation. A random nurse tried to make me leave...well, I guess you can figure out how that went...Glenn & I stood there in horror praying that our son was not going to die this way, while an Episcopalian minister tried to distract and comfort us.

The MRI could not be done now because they did not have a special ventilator that can go in the MRI. Nick was brought back up to the infamous "ROOM 8," where patients go who are more critical or need more watching. We hate this room, it is cramped and small and it is ridiculous that a room this small is the critical room! Sorry sidetrack...

Nick spent the night on the breathing machine and he is currently off to MRI for the past couple hours! It takes forever because of all the precautions that must be taken. No metal of any kind can go in this scanner....long story.

The latest theories on the cause of all this...toxicity from a medication that Nick has been on for a while...his Tacrolimus (which is his anti-rejection drug). Apparently it can cause this thing called "PRES," which stands for posterior reversible encephalopathy syndrome." The key word being reversible. Basically it cause swelling in and around the white matter of the occipital lobe. It can also be cause by high blood pressure, which Nick has not really had until just the past few days. Although, his pressure has been elevated more since the surgery.

They also think that Nick has this thing called TTP, which stands for thrombotic thrombocytopenia purpura. This is something they think is an autoimmune response, possible caused by the Tacro toxicity, that cause the body to chew up red blood cells and platelets. This explains why Nick has been dropping his counts since the surgery, which I have been telling them all along is not like him. Surprise, they have not been listening. Also, since the surgery and even before, Nick has been having these purple spots all over him and pettichiae, also pointed out to every doctor that comes to his bedside, also ignored! This would explain all the bruising that Nick has been having and worse so now since his surgery is over. Usually this must be treated with a blood "exchange" transfusion and/or plasmaphoresis (different than his photopheresis). This would require Nick to have a huge catheter put in his neck or groin and carries lots of risk due to his low platelets and bleeding. The doctors are waiting for the results of the MRI scan before they make any further plans. Nick has been placed on an anti-seizure medication, his has had an EEG and he has been seen by a neurologist last night and today.

Nick seems to have stabilized somewhat. As far as I know he has not had any more seizures. He spent a quiet and sedated night on the vent. Nick had a good nurse last night in whom I have great confidence. Also, Dr. Frosty was the fellow on call, so at least he knew Nick and his long history.

I have had an uneasy feeling for the past few day, nothing I could put my finger on, but, I just KNEW something was not right. Nick had been having some signs that he was having some memory issues and needing things repeated. We attributed this to his pain pump and his surgery. The chest tube actually came out on Wednesday and the last of his tube (the pee tube or Foley catheter) came out yesterday. Nick was doing OK, but, everything wasn't quite right. Yesterday, when PT came to work with him, he was having visual disturbances, changes in his visual field and seeing things like "baseball players" and "slot machines." He had obvious changes in his field of vision and was even having some trouble writing his name. This was all before the seizures started. Anyway, that is all I can manage to report right now. To say this has been hell, is an understatement. I feel like I am in that numb place where I cannot feel anything. I did have a good cry while waiting in the MRI for them to get Nick stabilized. I am very scared, as I don't know how much more this poor guy can take. He is still in there for he tries to wake up and pull out his tubes, he responds to his name and this is all good. The doctors hope to try to get him off the ventilator today. Although, I am not sure if this will actually happen. For now, Kate & I sit here waiting and praying for continued miracles on Nick's behalf.

“Consider it all joy, my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance. And let endurance have its perfect result, that you may be perfect and complete, lacking in nothing (James 1:2-4).”

“No one tests the depth of a river with both feet” African Proverb