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!