Air

I picture Nickolas like this one day; healed, free of the burdens he has been carrying for the past year, free of the pain, free of the bad dreams, free of lungs that betray him even as I write this.

I am sorry to say that Nick has taken a turn for the worse. Over the past few days his breathing "fits" have become more severe and more frequent. Last night was horrible. Nick was struggling to catch his breath, he felt tired and he felt like he couldn't slow his breathing. He was asking for medication to sedate him and take away the air hunger practically every hour on the hour. He cannot have the medicine this frequently so he would lie in silence, stoically trying to make through each torturous minute, until he could have the medicine and be put back to sleep. We have been telling the doctors about this since last Wednesday night. I cannot even begin to go into all that right now. Friday night I was at the hospital until 12:30AM trying to get Nick settled. On Saturday night, Dr. Frosty was actually the on-call fellow. I was so happy about this because I knew he would listen to me and I knew he would try to do something when he saw how hard Nick was having to work just to breath. And remember, this is all with Nick already on the ventilator.

They did a CXR which did not show anything. His monitor and respirator numbers did not show anything, and yet Nick continued to struggle to breath with every breath. They finally drew a blood gas and found that Nick's carbon dioxide level was very high. His venous CO2 was 70! His arterial CO2 was 62! Both very high numbers and his pH was borderline at 7.30 and 7.32. This number should be at least 7.35. Dr. Frosty had the respiratory therapist come in and make some changes on the breathing machine and then it was decided that Nick would get some mega-drugs to knock him out for the night and let him sleep. So last night he finally slept and I went home around 1Am to try and get some sleep. Pretty much every time I leave there at night I just cry myself all the way to my car. It is so hard to leave him like this, knowing that the least little activity could put him over the edge into another bad breathing spell that will make him air hungary all over again.

We then get a call from the hospital at 0730 on Sunday morning telling us that Nick had dropped his BP very low (most likely due to the sedation) and they had to give him fluid and put him on an IV drip to help his BP stay up. Glenn & I got up and headed for Hopkins. When we arrived Nick was actually awake but still very agitated, not able to breathe and asking for more medicine. It just breaks my heart to see him this way. I don't know what we are going to do. This latest round of breathing problems has really brough Nick's spirits down. He cannot focus on anything but breathing and trying to stay calm. I don't know WTF is going on with his lungs and apparently no one else does either. It seems he has been getting worse and worse with each passing day. Nick is not sure what to do either...when he feels this way, he doesn't want to fight anymore. He told us how tired he was and then he told us how he just wants to go home!! Oh my God what I wouldn't do to get him out of this place and bring him home where he could watch his birds, feel the sunlight through the window and just be home! It has been so long. I cannot believe that we have spent almost the entire summer in the hospital.

So on Sunday morning, the pulmonary doctors decide that one theory is that Nick's trach is too small and it needs to go up to a bigger size. Now he has had the #6 trach since it was changed on 7/23! Why now are we just coming up with this theory? I am once again not buying wha they are selling. But, once again, we are in a position where the doctors are trying to get Nick to try something with the hope that this will "fix" the breathing problems. HA!!!! If only it were that easy. There was no attending in house today (weekend...all work ceases until Monday) so Nick had to wait until Monday to go to the OR and get the trach sized up to a #8. In the meanwhile, they have put him on a slew of drugs to make him so sleepy that he doesn't feel anything or the air hunger feeling. They have him on Propofol (the MJ drug), Fentanyl, Ativan, and Haldol! All of these meds are being adjusted upward or downward depending ou what is happening with his level of agitation, BP, fluid status etc. It took most of the day, but he finally settled down to a place where his numbers are good. I am very upset at the rapid rate of Nick's decline. I am very upset and sad to have to go out and beg the doctor to come in an spend some time talking with me in order to learn about what is going on with Nick. His left chest sounds terrible with decreased breath sounds and lots of end expiratory wheezing. He is still gettinghis nebulize treatments, but, he gets them every four hours now.

After they take Nick and put in the #8, I am not sure what is going to happen. These questions are best left unaswered for now. All I know is I feel like all of our hopes and dreams for Nick's recovery are being sucked out of the vortex that is hislife right now. I am grieving for so many losses in Nick's life right now, I don't know how much more pain any of us can bear.

Nick is pretty much bed bound right now. He is on medications to numerous to mention. He had a fever two night ago, no one knows much about that either. All the promises that were made to Nick about speaking, eating, traveling, and being able to use the bathroom have proved to be empty at best and a cruel joke at worst. Glenn & I spent most of the day on Sunday having our hearts broken as we stood at Nick's bedside trying to cope with even the thought of losing this wonderful man with such a beautiful soul and mind. It is unthinkable and unimagineable and the pain is almost unbearable. How is it possible that this gets harder?

I am so tired right now I can't really even think straight. I keep falling asleep as I write this so I need to go to bed. I will try to update during the late afternoon or into the evening on Monday.

I know everyone has been storming Heaven with their prayers for Nick. Now more than ever we need everyone to pray for Nick's lungs to heal.