We are still in with no discussion of a discharge date! Every day Ian seems to have a de-satting episode. Mike was in with him over the weekend while I flew up to San Jose to pick up our sweet Lila from my parents house in Aptos. Honestly, I called him on Friday kind of freaking out asking him to come by. They had done an x-ray on Thursday night and his lungs had gotten worse since we've been in and doing all this treatment!
They did another one last night (Sunday) and it was even worse than Thursday, although the doctor is saying it was just a mucus plug and that's a good sign. I guess the mucus is moving up the lung, but plugging it up on the way out, which is causing the de-satting episodes. It's all very frustrating and a bit confusing.
The episode last night was very stressful, as they all are. Dr. I came by and we all did the usual; turned up the flow to 15 liters again, upped his oxygen to 100%, vest therapy and suctioning. That's all we can do I guess. I think the only alternative is to intubate him which we don't want to do. Although at this point, I'm wondering if we should have done that to begin with and maybe it would have given his little body the extra boost it needed to heal.
He's also got really strange diarrhea. I know, TMI, but it's really tripping me out. I'm sure it's due to the antibiotics but it's just one more thing for his little body to deal with. And of course, his teeth are still working their way through his gums which adds to his frustrations.
If we can just get some sleep that would help also. He can't eat again which makes him more agitated at night. He's starting to get sick of the empty bottle. Also his monitor is going off all night due to his saturation dropping just below the alarm level as well as his many PVC's (or irregular heartbeats) His heart rate also drops lower than typical while he's sleeping, down in the 50's. The Cardiologists say neither of these things are anything to be worried about. That they can be caused by his sickness. Still makes us nervous especially when the thing is beeping to remind me all night.
Do I sound whiny? I guess I am. As you could imagine, the whole Abercrombie Family is ready for our house to be full with the whole gang again. This is wearing on all of us. Mike and Lila came by last night to drop off Ian's Synagis shots (and some pizza) that I had picked up from Dr. Woo's office and had forgotten in our fridge. Plan was to meet them downstairs so she didn't have to come around the floor since she's not supposed to come in to see Ian. He was in this middle of his de-satting episode so I couldn't come down. They came up and were outside the door. Mike held her so she could say hi to him and was dying to give him a hug but she couldn't. She lost it, Mike started loosing it, and it was all I could do to hold it together. It may sound a bit wacky to say, but I long to hear the drone of our home concentrator.
So the plan is to be regimented with breathing treatments during which he wears his vibrating vest (pictured) followed by deep suctioning. He's getting the last of his antibiotics today, she upped his Sildenafil again and we will hope for a better tomorrow.
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