Long Day Ends With a Smile!

I'm amazed at how long this day has been, but yet I'm just now feeling like I really need to hit the hay. So, I'll probably be more brief than I should, forgive me.

This morning started at 3:45 am with a "normal" desaturation for Mason. The problem was, he didn't go back to sleep. So, at 4:30, the nurses and I thought we may as well do his daily blood draw so we wouldn't have to awaken him (and me) again at 6 am. Moments after making that decision and just after changing his diaper, Mason decided to give us all another scare. He desaturated significantly to the point that, as we found out tonight, the attending doctor was thinking they would have to place Mason on a ventilator - they had the intubation tray ready outside of our room. They turned his oxygen back up to 20L and 100% oxygen (remember from last night's post, he was down to 14L and 90%). I called Bill at 4:55 am (not a good time for anyone to get a call in the morning) and told him he should come over because Mason's saturations were just not coming up. After hanging up the phone, I realized that Mason had been rubbing his nose quite a bit. So, I looked for boogers. Sure enough, a major blocker in each of his nostrils. 3 of us tried to suction him to get those things out, but to no avail. So, I tried to move them with a cotton swab. I ended up dislodging them, but didn't get them out. Apparently it was enough. Between the increased oxygen, the dislodged boogers, and replacing the water in the oxygen humidifier/heater (not having enough ends up with ice cold air being blown up his nose at a rate of 20 liters per minute -- not comfortable by any means!), something worked and Mason started saturating better. So, by the time that Bill got here, the crisis was averted and we could all get some sleep. Mason slept well after all of this for several hours afterward and started saturating at 100% within a half hour or so and remained that way until they started weaning him down again. Throughout the day, they have continued to wean him and he's now at 8L on 100% oxygen and saturating at 95% while trying to go to sleep.

After talking to the pediatric team and the cardiologists, it was decided that Mason should take a medication that acts like the nitric oxide that has helped him so much. It is a drug that dilates all the vessels in the body to increase blood flow everywhere. The nitric oxide goes directly to his lungs, but isn't really feasible to do at home. So, the next best thing is this drug. It does run the risk of lowering his blood pressure, so they're starting on a small dose and will titrate him up based on his response. If he tolerates it well, and it helps, he will then wean off of the nitric oxide and see how he does. If it ends up working, I'm a little afraid of the sick humor that will ensue as I tell people that my 21 month old son is on Viagra...Go ahead, giggle, you know you want to! It's always better to end the day with a smile on your face!! :-)