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

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