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

Stained-Glass Tears

Nick continues to slowly improve from his biopsy. Today has been quiet. Nick spent the day resting and getting his bearings after the 48-hour marathon that was Friday and Saturday. Nick did not get much sleep last night so he has tired eyes. He has been using his pain button to keep his pain under control and this is also making him a little sleepy. Tomorrow will be a busy day for Nick as he may have to go for a CT scan and he might get his chest tube out. This would be a huge step in the right direction for sure. Once that tube comes out all of the others will fall like dominoes.

Last night was a little rough for me when I got home. I felt like I had gotten a little carried away with myself on my post...thinking that somehow he was going to be miraculously cured. Once again the gravity of Nick's situation hit me hard and the unfair reality of it just always makes me cry. Tonight I hope to get home a little earlier for I feel that lack of sleep is also playing into the volatility of my emotions. It takes an immense amount of emotional energy to reign in all of the emotions one experiences in a situation like this...I have been doing that for over a year now. It is like when the storm clouds start to roll in and the thunder starts to rumble in the distance, the signs are there that something big is about to jump off. When the rain finally comes it is bound to be a gully washer, but, when it is over, the sun emerges and hopefully the soul is cleansed and sometime you might even get a rainbow! The song reminds me of a more gentle rain...the kind of rain where you can sit on your porch swing and feel the breeze and listen to the music of the rain falling gently like tears from the sky.

Circle of Love

So this picture is entitled, "Circle of Love" and I feel that right now Nick is in this circle, surrounded by family and friends, in love, hope, and prayer. So many of you have been praying for Nick and as my Mom says, "storming heaven." For the moment it seems those prayers have lifted Nick over another huge obstacle. I think if Nick had these two adorable cats, he would name them "Huff" and "Puff." Reminds me of the two little mice in the cartoon called, Pixie & Dixie.

Forty-Eight Hours...

The past forty-eight hours have been hell and I have never experienced such fear and emotional pain in my life. So let me start at the beginning....

Yesterday, Nick has to spend the entire day "waiting" to go to the OR. Glenn, Sara, Kate and I were at his bedside the entire day. (I had spent the night and therefore, I was already quite exhausted.) It was a time for quiet reflection and many of Nick's hospital buddies came by to wish him well and let him know they would see him on Monday. Nick was still breathing hard on 40% oxygen via high flow face mask. He was so pale and his hematocrit was low...yet they didn't want to give him any blood. I know he was nervous and scared...who wouldn't be? The anesthesia doctors came to see Nick and they were both very nice. The attending anesthesiologist was VERY concerned and expressed this to me...it was not easy to hear how worried she was that Nick was going to have a very rough go of it (code for he might not make it through the procedure!) The anesthesia doctors actually came to pick Nick up and take him to the OR...this is also very unusual, but, this is how worried they were about his breathing status.

Later that night...
Nick returned from the OR directly to his room. He did not go to the recovery room. The doctor came out and spoke to us briefly (such an anti-climatic feeling to such a potentially disastrous operation). More on the findings later in the post. We then proceeded up to Nick's room, where we found him on the breathing tube (and ventilator) for the night, quite agitated, HR and BP were off the charts (so much for the plan to keep him well sedated and pain free!). Nick's sedation had to be adjusted all night...he would waffle between being completely out of it and asleep to roaring back into semi-consciousness, trying to sit up, pulling at his line, trying to push the breathing tube out of his mouth with his tongue, trying to get the bite block out of his mouth, looking around like he was awake (but, he was drugged up majorly) eyes rolling in his head, trying to talk and mouth words to us (you can't talk at all when you have a breathing tube in your airway) and generally being agitated. Nothing we said or did seemed to get through, he was a crazed madman. At one point his arterial line became a victim of one of these agitated episodes and had to be replaced. About ten sticks into his artery later, they finally got one back in! He needs this line to draw what are called "blood gasses" to check how his breathing was doing on the breathing machine.

A Leap of Faith and Trust Your Cape
I cannot begin to describe how hard it is to watch this process. Add to that my already depleted emotional and physical state and you have a recipe for disaster in terms of emotional turmoil and fragile psyches. All of us were going through our own personal hell! Each of us trying not to show how deeply we were hurting, each of us taking our turn at shedding tears of pent up anger, frustration, and sadness. Each of us trying to comfort the other. Before long it was time for Nick to head off to the OR. Kate and Sara gave their hugs and kisses. Glenn & I walked beside Nick's bed all the way to the OR door. There we had to say all we wanted to say to Nick in 30 seconds or less! Nick was so brave and yet, I know he was so scared. Walking away from those OR doors was so hard...it was like someone was taking my baby away from me. I did not want to give him up into the arms of strangers and yet I had no choice. Now it was in the hands of a higher power to watch over my son and keep him from harm. In this I could do nothing to protect him. As Nick said to me in conversation about the biopsy procedure..."I guess I will have to take a leap of faith and trust my cape." Nick likes the song "The Cape" by Guy Davis. I would put it on my playlist but I can't find it. Check it out. It's a cool song.

Fast forward to Saturday, June 20th sometime after 2AM....
The doctors finally were able to get Nick on enough sedation to keep him calm and free of pain.
Glenn spent the night and I went home to get some much needed rest and sleep. When I returned Saturday morning around 10AM, Nick was sleeping and doing all the breathing on his own with some support from the ventilator. Throughout the day, they weaned his sedation meds and then they started decreasing the dosing on his pain meds in order to try and get him off the ventilator. When trying to get someone off a breathing machine there is a fine balance between sedating to control pain and not suppressing the breathing.

Communicating Important Stuff...
As each hour passed, Nick became less sleepy and more aware of his surrounding. He was able to nod yes and no to questions and communicate with us by writing on a piece of paper. At one point, Nick shook his hand to indicate he wanted the pencil to write something, we all gathered around the paper trying to figure out what he was going to tell us....he was in pain, he couldn't catch his breath, he wanted to get the tube out...something of earth shattering importance. So what does Nick write on the paper.....SOCCER! He wanted us to put to soccer game on the the TV!!!! I didn't know if I should laugh or cry! Later in the afternoon, he did the same thing with the Oriole game! (Leslie, I don't know if you read my blog, but, this part of the story made me think of Kevin!)

Meanwhile back at the ranch, the op tempo on Weinberg today was extremely high. We kept getting reports from our nurse that things were "really busy" and the doctors were not able to get Nick's breathing tube out yet. The nurse also said if it got too late, Nick might have to wait until tomorrow! Well, that did not go over too well with any of us, so we kept hoping that things would quiet down and the doctor would be available to attend to his "other" patient. Nick continued to wake up very nicely. He was calm and cool as a cucumber. He figured out a way to go to his happy place and not let the breathing tube bother him too much. We were able to untie the restraints that were holding down his arms from the crazy man the night before. Nick did not like having these restraints on but they were for his own safety. Now he was lucid enough to know he must not pull on things. So he was content to be free to scratch his nose, wipe his eyes, and just move his arms more freely. Kate, Sara and I stood vigil at the bed (we sent Glenn home to sleep) to make sure Nick stayed away from his breathing tube. Nick wrote that the breathing tube and bite block were "a pain in the ass!" Later, he woke and wrote...."What's going on?" "It has been 90 minutes. When is the doctor coming?" It was now 7PM and I was not about to let them put Nick back in la la land for another night. He had passed all his breathing tests with flying colors, his pain and sedation meds had been cut way back and he was ready. DAMN IT! TAKE OUT THE TUBE ALREADY! Just then, a respiratory therapist came in and said the doctor gave her the go ahead to get the tube out. In a matter of minutes, Nick was off the breathing machine, the breathing tube was out and he was comfortably breathing completely on his own, with the well familiar green oxygen mask back on his face!! YEEEEAAAAHHHHH!!!!!

What's next?
It is amazing that all things went so smoothly. Also, I forgot to mention that Nick was able to have the biopsy with just the scope. So they didn't have to make the large 8-12" incision in the side of his chest that they thought they might! This also helped decrease the amount of pain which ultimately helped Nick tolerate the pain level with less sedation and therefore, get off the ventilator.

Now Nick is awake and watching TV, eating some ice chips and actually breathing very gently. I don't quite understand why his breathing so easy but I am not going to question it. Perhaps the sedation is helping with something, but, it doesn't make any sense to me. For now, I will take whatever good news I can get and enjoy the hell out of it. There is still a long way to go. The next hurdle is getting the chest tube out and controlling the pain until that happens. The results of the biopsy won't be back until Tuesday at the earliest, so it will be a waiting game until then. If Nick continues to do this well on his breathing, I might have to concede that a miracle has occurred. Nothing about his biopsy was supposed to "fix" anything. I am not going to get to carried away, but, this is just a little strange right now. Time for me to sign off. It is late and it has taken me forever to write this post. Still tired and there is a long week ahead. Please keep praying that they find something that will help Nick get better!

Big Smile Nick

I wish I could make this picture bigger so everyone could see the beautiful man that is my son. This is my Nick...tall and handsome, strong and healthy. Nick with his crazy, curly, impossibly thick hair. Nick with a big smile...happy and living every moment with joy and happiness.

As I sit here in Nick's dark room at 4AM in the morning, unable to sleep because there is nowhere to lie down that does not create pains in every joint I own, I still cannot believe that this is really happening to my son. Now he sleeps, his only solace lately. And yet, even in sleep his breathing is labored. You can't hear it, but, you can see it. The chest rising and falling with jagged stutters and stops. Not at all the smooth in and out we all take for granted every day. The breaths per minute always too high, still wearing that damned plastic oxygen mask. Still fighting to stay alive, valiant even in sleep. Yesterday morning and tonight, I find him suddenly slowing his breathing, too shallow, too slow, then his heart rate begins to go down way lower than it has ever been in recent months. There is a name for this kind of breathing, it is called Cheyenne-Stokes respirations. Nick sleeps right through this rhythmical high and low breathing, seemingly unaware of the fight his body is having to keep precious oxygen pumping to his body. Why, oh why, must his lungs be broken?

Today, Nick will go for this ghastly lung biopsy. I dread it with every fiber of my being. I don't know if this is the right choice, but, it was Nick's choice and he has made it. We are all still praying for a miracle to come from this. We all want him to be well in the worst way. The past 13 days have been hell. To watch Nick suffer this latest insult on his body has been truly painful and makes my heart just break in two. I want to believe that the doctors will find something to fix and all that he has to go through will be worth it in the end. I don't know how I will forgive myself if he has to suffer anymore.

Nick is not scheduled until 3PM so it will be a very long day and we won't know anything until later in the evening. Because it is a weekend, the tests won't even be back until Tuesday at the earliest. In the meanwhile, I hope and pray that Nick will sail through this whole thing with flying colors. At best this will be a huge test of Nick's strength and willpower. He has been a fighter for so long, I just need to know he has another round in him. I wouldn't blame him for throwing in the towel, but, that is not our Nick.

Lately, Nick has been so exhausted that even thinking has been tough and there is always way too much to think about. So for now, I must sign off. I am going to go and hold my son and keep him safe for at least a few more hours. If only a mother's love could cure cancer and all its horrible complications. Then my beautiful son would be well and truly healed.

I Want My Miracle

“Never tell a young person that anything cannot be done. God may have been waiting centuries for someone ignorant enough of the impossible to do that very thing.” G. M. Trevelyan

Nick continues to struggle with the decision about the biopsy. I am uncertain as to what is the best way to help him. I feel helpless to ease his burden or his suffering both physical and emotional. Nick has been "stable," however, his breathing has not shown any signs of improvement since he has been here in the hospital. Nick's status has not returned to the baseline he had prior to coming into the hospital, which was not great, but, better than now.

Nick has been in a holding pattern for the past ten days. It feels like the doctors are giving Nick two options, the biopsy surgery or nothing. This may not be the case, but, this is what it feels like to us. They have not presented a plan as to what they would do if Nick chose not to have the biopsy done. The choice may appear simple to them, but, it is quite complicated and the procedure is fraught with danger and outcomes we may not like. I cannot tell you how horrible it is to feel "trapped" into making this "lesser of two evils" choice. Ultimately it is not just about the "test." It is about all the bigger life issues that come with choosing to have the test or choosing not to have the test.

There is nothing in life that prepares a young adult to make a choice like this! There is nothing that prepares his Mom, his Dad, his sister, his girlfriend, his family and his friends to help one make a choice like this. I keep asking myself why, why why??? If you believe in higher powers trying to send some message...I cannot figure out what message that would be. I am powerless to help my own child. I have done everything I know how to do and yet, it is not enough. It is a feeling of such anguish and pain that it regularly brings me to my knees and makes me want to curl up into a ball of sobbing mush.

I have no patience for the ruminations of medical science. I have no care for the limits of their ability to fix what they have done. How dare they shrug their shoulders at us and tell us in somber and hushed tones that this biopsy is the last thing they have in their bag of tricks. Is this one trick that is left the one that will work? There are no guarantees either way. God knows we are clinging to the tatters of our shattered hopes and dreams with all the tenacity and strength we can muster!

I once read a book entitled, "It's Good To Know A Miracle." It was another mother's story about her daughter who successfully navigated this pot-hole ridden path, they call a "cure" for leukemia. I want Nick to be a MIRACLE too! I want Nick to have a reprieve...I want the red phone on the wall to ring. I want it to ring now...today! This is too much for anyone to have to bear.

Nickolas is staying positive and strong, but, it has not been easy for him. Please pray for him to receive the guidance, mercy and strength he needs to move forward. Since he has been in the hospital, he has just been marking time. He is awake and completely present, but, physically, his lungs and his breathing are keeping him on bedrest. He hasn't been getting out of bed at all. He will sometimes sit at the edge of the bed or sit up in the bed to eat. His appetite has been steadily declining and he has not gained back an ounce of weight. His oxygen requirement is not too much higher than when he was at home, but, now he is just lying around in bed...not moving, standing, sitting up etc. There is really nothing that they are doing for him right now that is making a difference in his breathing situation.

For the most part the nurses have been very good, although Nick's care is minimal so most don't spend too much time in the room. There are a few nurses here we like very much and they genuinely care about Nick. One of the most helpful people in this whole process has been a social worker here on the floor. She has been such a wonderful support for Nick and all of us. She has such a beautiful way of expressing things, a gentle way to ask questions and she actually listens to Nick and I when we talk to her about everything that has been going on. Thank goodness for kind and caring people who help you keep your footing on this path strewn with obstacles. I am tired and I must go. Since tomorrow is Monday, things will actually be happening at the hospital. I am so scared right now, words cannot express. This is a new level of terror.

“Even a happy life cannot be without a measure of darkness, and the word happy would lose its meaning if it were not balanced by sadness. It is far better take things as they come along with patience and equanimity.” Carl Gustav Jung

The Enemy At the Gate

Sometimes you feel like a nut...
Sometimes you don't.

It is late and I should be long ago in bed...trying to find the energy to post an update. Nick is hanging in there as best as can be expected right now. The days all seem to run together and I have given up on keeping all my ducks in a row. For right now I am happy with keeping some of my ducks in a row.

The decision on the lung biopsy has not been made. We have talked with so many doctors, our heads are spinning. The last couple days have been a time for processing all the information, and also for quiet and thoughtful reflection, a time to just listen to one's inner voice and see what may come. Ultimately, Nick will find his way. He knows that we love him and we will be there for him no matter what he decides. Nick's path on this journey has always been strewn with potholes, fallen trees, boulders and other obstacles that appear insurmountable. Not one to shy away from a challenge, Nickolas has managed to defy the odds and emerge victorious. (After all, his name means, "victory of the people!")

In true Nick form, even with all this crap hanging over his head, even with fast breathing and high oxygen flowing through a plastic green mask, today Nick wanted to discuss what color kitten or cat we should get! We have all been missing the Mickster and we figure a new furry edition to our lives will make us all smile and purr with contentment. Isn't that all we really want from this life...smiles, laughter, and joy? Please send your prayers for Nick, please pull in whatever Heavenly favors you have outstanding, please send your good wishes to Nick for he needs everyone pulling for him right now. With courage and tenacity we must remain steadfast in our resolve for the enemy is at the gate.

More Sand

Walking through the desert,
Thirsty and tired.
Praying that the water hole is over the next ridge.
You climb in the searing heat for what seems like an eternity,
Your heart is heavy and your lungs are burning.
The heat rises relentlessly from the desert floor,
Parched lips and blistered feet
cry out for the blessed relief of cool, clear, water.
Just one more hill, you can make it, just one more climb.
We crest the hill, this has to be it...our survival depends on that water.
Only there is no water, there is only more sand.

Nick was readmitted to the hospital this past Friday. After spending most of Thursday and Friday down at Hopkins getting photopheresis treatments, blood work, dressing changes, seeing the doctor, chest CT scans and more...we headed for home. Nick's lung status has been declining by slow degrees ever since he left the hospital on May 13th. We have called, seen and talked to the doctor on endless number of occasions. We really don't know what happened or why, but, for some reason Nick was having a lot of trouble with his breathing and he was very short of breath. So around 9PM on Friday night we returned to Hopkins.

Saturday was rough as Nick was really not feeling well and any activity (sitting on side of bed) kicked off what I am now calling a "spell" where Nick's oxygen level drops very low and his breathing becomes extremely labored. This happened twice on Saturday and it was so scary for Nick and by default those of us gathered around his bed trying to figure out how to help him.

Fortunately, he was a bit better on Sunday, but, still on a lot of oxygen (long story) and really not able to get out of bed for any reason. On Sunday, he seemed a little perkier and his appetite was a little improved. We have seen quite a few doctors and the bottom line is they once again want Nick to undergo an open lung biopsy. Without going into detail right now, suffice to say, that this is an extremely risky procedure for Nick to go through with his lungs in their current state. This was the same test that Dr. Hallelujah decided to cancel on the day of the test!! Now there is a new attending, who feels that Nick should get the biopsy for fear that "they are missing something that might be able to be fixed." They were trying to have the test done today (Monday) but, Nick wants more time to think about this decision and he doesn't want to be rushed into something like this.

Let me just say that I don't have the energy to address even half of what has been going on, this is the main reason I haven't been posting a lot because I need to focus the energy I have on Nick and help him to get through this latest stretch of desert. We are all parched and in sore need of restoration. I will try to write more later, but for now I must go to bed. I am asking everyone to pray for Nick to receive the strength and guidance he needs to make this decision.

“When the morning's freshness has been replaced by the weariness of midday, when the leg muscles give under the strain, the climb seems endless, and suddenly nothing will go quite as you wish-it is then that you must not hesitate.” ~Dag Hammarskjold