We're On. No, We're Off. No, We're On Again

Holy cow! It was hard to keep up with the changing of the wind today, but I am happy to say that we ended the day with the same plan as yesterday. You see, we're used to having new players in this game week after week. We're used to people having their own perspective and changing how the game is played. But, when it comes to a plan when the previous players are so adamant that it needs to happen, please do not change it!

Ok, I'll stop being vague. This morning, during rounds, the team once again discussed Mason's heart issue, his response to the medications, and his "readiness" for surgery. The attending pediatrician (intensivist) was still pretty reluctant to ok Mason for the surgery tomorrow. He said he needed to talk to the ENT (ear nose and throat doctor) who was going to do the surgery. Then, the ENT resident came in to get the surgery consent form signed and said that he usually defers to the intensivist if they don't think a patient is ready for surgery. CRAP!! Soon after, the intensivist came back into the room and said he did not think it would be wise to do the surgery and that waiting until Friday would give him (the doctor) a chance to help Mason get even better. Seriously? What was he going to be able to do that the others could not in the 10 days since Mason was intubated AND why hadn't they done those things before???? Just a couple of questions going through our minds. He did leave a little window for someone to change his mind and said he was going to have a meeting of the minds with the ENT surgeon who would be performing the surgery, the cardiologists, the cardiac anesthesiologist, and the other anesthesiologist to discuss Mason's readiness for surgery and the risks. I'm not exactly sure what happened in that meeting, but from what I gather, the WONDERFUL cardiologist who was on last week came back and weighed in on the discussion and someone asked the intensivist the same questions we had above. When he couldn't come up with a satisfactory answer, he changed his mind and decided that doing the surgery tomorrow is the right plan.

Now, please understand, there is a HUGE risk in doing the surgery tomorrow. Mason is "critically stable," he is not stable by any means. The airway created with the surgery is not as reliable or secure and has a huge risk of problem should it become blocked or dislodged in any way. The tracheostomy and tracheostomy tube are not going to fix Mason. They are not going to help him get off of the ventilator any time in the near future. The reason we are pushing so hard for doing this now is because maybe, just maybe he will tolerate the tube in his neck better than the tube in his mouth. Maybe, just maybe, he will be able to be more awake and not need the paralytics after he heals from the surgery. If is able to be weaned off of the paralytics, maybe, just maybe he will be able to move around some; he will be able to move his joints; he will be able to move fluid out so that he doesn't stay so swollen; he will be able to move his gut so that he doesn't need to continue to be on "Colon Blow"; he will be able to cough so that mucus doesn't get stuck in his airway and continue to deflate the upper lobe of his right lung. Maybe, just maybe he will have a chance to survive this hospitalization and be able to come home again someday.

As far as Mason today, he had a fairly good day again. I was so amazed and excited to wake up this morning and see his saturations in the 90's on an oxygen concentration of 70%. I haven't seen that in I can't remember how long! It was so wonderful!! His pulmonary pressures continued to be high and even raised after they weaned the Nitric Oxide down to 2. He doesn't seem to mind from a saturation perspective, but his heart is having to work harder. They have also realized that his heart is not being as efficient as it should and some of the distention of his belly is because his heart is not pumping enough to get the fluid up his large abdominal vein (inferior vena cava) and out of his system. So, they have given him a new medication to help - for you health care types, it's Milrinone. We are hopeful that this will help to let his belly come back to normal size and he can start to feel a little bit better. As far as the inner belly stuff goes, well, that's about it...he's still going. For a guy who hasn't eaten through his stomach in about 5 days, he sure has a lot of poop!

One last thing I want to mention tonight. I feel blessed! I have an amazing husband who is also a wonderful father, nurse, doctor, respiratory therapist, and champion booger getter. I have an incredible family who supports me in everything I do. And I have extraordinary friends who are doing so much to help me get through this every day. You all know me so well and are taking care of me despite my stubbornness and attempts at fierce independence. I am so grateful for all the love and support you all are showing. Thank you!