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.