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.