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