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