Are you kidding me?

Little Mason has survived so much and has faced yet another challenge. Saturday we found out that part of his lung had collapsed due to the fact that the drainage tube pump had been disconnected and no one noticed. Fortunately, it popped right back up when the pump was started. Whew, another disaster averted-so wrong. By that evening Mason was having these fits of pain and kept waking from his sleep. The pain hit his body so horribly that he would wrythe around so much he turned himself sideways on the bed. The only thing that seemed to help him was fentenol, even though he had both Motrin and Tylenol around the clock. I asked the nurses who took care of him as well as one of the other nurses that were chatting with me if there was any relation to his pain and his lungs., Each one reassured me that No, there shouldn't be any pain from that. One of our nurses even told me that it appeared Mason was having withdrawl symptoms from his pain medications. She was in favor of him continuing them and then trying to taper them off. I had decided to go take care of some personal matters outside the hospital and found out when I returned that she had given him a dose of fentenol because he would not calm down. I even questioned his drop in o2 saturations during rounds and was told we shouldn't concentrate so much on numbers but on how Mason looks. Well, I totally agree if we were at home. In the hospital setting, I think there should be a whole lot more emphasis in analyzing those numbers.


We were somehow cleared to move up to 3 West Sunday night. Poor Mason started to be totally unconsoleable as soon as we arrived. More drugs....throughout the night his 02 levels continued to drop and the fellow on call arrived to check on him. At the time, Mason was peaceful and it didn't look like there was a problem. Wouldn't you know it! Fortunately, our nurses were persistent and asked him to check on him again. An xray was order for the morning and we continued to wait, console, give drugs until then. The first xray showed pneumothorax-liquid in the lungs. Soon after PA Quong came by and taped up the area around Mason's chest tube to make a tighter seal. The thought was that less air would escape and help fill the lung. Anothr xray a couple of hours later proved the entire right lung was now filled with fluid. This is known as a tension pneumothorax and one of the symptoms are these sharp pains. Is it possible that this mothers/woman's intuition is more accurate? I was so upset, I just couldn't believe that someone could not have caught this sooner. Someone should have monitored him more closely, especially since his lung had already collapsed once. Fello Teymour said since the taping didn't work we would have to replace the chest tube. Mason was then made NPO (no food) and we were set to go to the procedure room at CVICU. The NP, Kirsten, told me the procedure itself would be approx 10 minutes. For the second time, I heard those dreaded words, Parents sign the consent form and never think that those things can happen. Are you kidding me? Is this something I need to hear at this point???If we weren't headed down right at that moment I don't know what I would have said. I had reached the maximum. She also indicated she would find me once the procedure was done. Apparently, she forgot since I hung around outside the unit for over an hour when I saw Teymour, who told me everything looked fine and the xray was good. I went back with Heidi, our social worker, and saw Mason who was pretty uncomfortable. One of the fellows said that they inserted another line and that is actually what took the longest. Come on, someone do some follow up!
Another shocker came, when during rounds, the team was discussing Mason's severly dysfunctional ventricle. We went from moderate to severe in the same period? Who the heck is reading these things and who do I listen to? I asked to see Dr. Roth for clarification.
Before 4 or 5 pm the Director of Nurses came by and excused Dr. Roth for not being able to visit with me today but said he would stop by tomorrow. She said he had told her that there were several things I was concerned about and she was there to follow up. Wow, did I have a word or two about everything that had happend to us. While somewhat sypathetic, she did say that they were somewhat "trained" to say those things regarding consent. I made it clear that things should be said in another manner and especially at an appropriate time. In addition, I asked her to follow up with 2 other Moms, whom I know have had various other problems. Dale, Haley's mom even had a nurse laugh at the fact that her infant daughter's 02 stats were so low. She said she felt she could just kill someone and she asked another nurse to take over and she left the room. The Mom from Denmark is afraid/worried to leave her boy overnight and he is 15 or 16. Not a lot of confidence to be found around here right now. I was able to bring up several things such as the consent form comment, the complaints from nurses regarding the Massimo 02 sat probs, the concerns from Dale and Denmark family, the issue with the MRI an Mason not eating for 12 hours, etc. It was a regular gripe session, but it didn't make me feel any better.
As for Mason, he is currently peacefully resting and we have this tough boy another day! The kids left Sunday to Monterrey with Grandma and Malena and Michael is with Ernie at home. In the meantime, it is back to the hospital grind. Mommy staying nearby Mason and his crib. Oh we even have a private room-he has CiDif and is on contact precautions. Bet you don't here that too often. That is okay-almost every kid under 6 months carries this around and since he was tested for it and it showed up we got our our room-away from everyone else.
Okay, enough rambling and time for some sleep. Keep those prayers coming, Little Mason sure appreciates them. He sure knows he is wanted!