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