60 Days and Counting

I can't believe we've been here 60 days. At times it seems much longer than that and at times it seems it can't have been that long. Today has been a snapshot of the roller coaster we've been riding since the beginning with huge ups and huge downs - and it's only just after 4 in the afternoon.

I'll start with the huge downs. Sometime around 12:15 this afternoon, I watched Mason for all intents and purposes die. These were the worst moments of my life and I am so grateful that they were just moments and that he "recovered" beautifully. Mason is becoming more and more active as he gets stronger and stronger. This is both a blessing and a curse. We are thankful that he is regaining his strength so quickly, but sad that he is so agitated and frustrated that he cannot always do what he wants when he wants because of the ventilator tubing or the other various cords and tubes around him. This morning was no exception - he was frustrated with the trach, the vent, and all of the tubing. He is strong enough now that he can roll over, but because of the trach and vent, he ends up rolling into trouble. After a very big roll around 12:15 this afternoon, I untethered him, unwound the tubing and stepped aside to let him keep playing. After a bit, the ventilator started alarming with a sound that meant he had a high breathing rate or was getting high volumes - nothing new, nothing to worry about. So, then after finishing up what I was doing (probably reading a status update on Facebook), I walked back over to him and looked at the vent. It didn't look right. His breathing rate was way too high and his volumes were way too low, so I thought the vent wasn't working right again. I looked at Mason and he did not look good. I got the RT who was just outside our door who came in and did a very quick assessment - the vent wasn't malfunctioning, but Mason wasn't getting enough air, so she started bagging him. Usually, once we start bagging him, his saturations come up and he starts to perk up. This time, that did not happen. The saturation monitor wasn't picking up anything and his heart rate was dropping fast. Mason did not look good and we couldn't figure out why. So, the RT hooked him back up to the ventilator thinking that might help him and we started to hear air like there was a leak or something. With some brilliant thinking, the RT asked if Mason's trach was even in place. I couldn't believe it could be that simple, but quickly looked under the foam protective layer and sure enough, the trach itself was laying sideways across his neck. I couldn't believe my eyes and thought time had stopped. My fingers worked so quickly to put that thing back in his throat and thankfully, it slid in without any problems. The moment it went in, Mason's heart rate started to go back up, his saturation monitor started to pick up oxygen in his blood and he started to wake up. Within minutes, he was pinking up and he was back to saturating in the 80's. While all this was going on, we turned him up to 100% oxygen, but within minutes after the trach was put back in, we were able to turn him back down to 66% where he had been before he rolled over. I am still shaking thinking about all of this. He had come so far in the last 3 weeks, I wasn't about to lose him now. I can't believe how close we came to losing him because of a stupid "mechanical error." I am so, so grateful for the RT who was here. She stayed calm, she assessed the situation, and she figured out what was going on. God, and all of Mason's guardian angels were once again looking out for him. For that, I am so thankful! You can rest assured, I will be checking under the foam for the trach placement before doing anything in the future!!!

The impact of this event resonated through our care conference that took place just 30 minutes after everything was "back to normal." I went into the conference feeling like Mason had reminded all of us just how fragile his health was. The medical team interpreted it differently. This event showed them that Mason isn't as fragile as they thought. He recovered very quickly from a very significant event with a significant drop in his heart rate and saturations and seemed to be no worse for the wear. They went into the conference feeling like his improvements over the last 3 weeks have been "nothing short of a miracle." Yes, those were the words that were used.

And now for the huge ups. We came to good agreements in the care conference and have re-started the plans for bringing Mason home. We don't know if he has months to live, or if it will be years, or even if it will be a long, happy life. The medical team no longer feels that he has hours or days, or really even weeks. They think he's got a chance. So, we have resumed thinking about a future.

• We weaned the PEEP down to 10 today and will stay there.
• Over the next couple of weeks, we will be intent on decreasing his oxygen concentration to under 40% (he's on 66% today and if tolerated will decrease by 1% every 6 hours).
• We will continue to do all of the weaning on the ventilator he's using now, and switch over to the home vent after he's on the settings he'll stay on once at home.
• We will continue the steroid wean as I laid out, but if we can't decrease the oxygen, then we'll keep the steroids at the higher dose until we can.
• We are going to work toward getting rid of the PICC line to decrease the risk for infection.
• We are going to repeat an ECHO (ultrasound of the heart) to see if the heart medications have had any impact on Mason's pulmonary hypertension (his heart condition).

All of this is going to take time, and as of today, all of the players are aware that Mason is setting the timeline and the rules. I believe that we will be working together to help Mason avoid any complications and do as well as he can in his progress toward recovery.

I have saved the best for last (or at least it's the best in my mind). The hugest up for today came during the care conference. When we asked about Mason's prognosis and whether or not we should reconsider some of our decisions about his care, it was suggested to us that we reconsider his code status. We are so happy to report that for the 2nd time in Mason's life, we have changed from a Do Not Resuscitate status to Full Code. In other words, there is enough potential for Mason's quality of life that we will do everything we can to keep him alive. He has clearly shown us that he ain't done fighting yet!

Rate: 28
Inspiratory Pressure: 18
Inspiratory Time: 0.65
PEEP: 10
FiO2: 66%