Tonight marks 6 weeks since Benjamin was flown out to Children’s from ARH! When I look at the past 6 weeks I’m not sure how I made it through them. Just thinking back to him being flown out and us being told to both go in the Helicopter because he probably wouldn’t make the flight to Children’s makes me all teary-eyed. When I think of how far he’s come in these 6 weeks, I’m amazed at God’s grace.
Tonight (and always but especially tonight) I’m missing my little boy. I think of how quiet the house is without him. And all the specialness he brings to our lives. Each of our boys is special in a different way but I’m always amazed at the joy & zest Benjamin has for life even through all his trials. I think of a picture that the nurses took at the hospital of Benjamin smiling with his impish little grin while on a ventilator. I don’t know if I’d be able to do that.
Yesterday before I went to visit Benjamin the nurses had him up in a wheelchair. They propped his ventilator up with pillows and put a table with a toy piano in front of him so that he could play. He did this for about 2 hours and then tired out. Of course that was the point that I came to visit so he slept through my entire visit. I’m hoping that tomorrow he’ll have a bit more energy when I go see him. I really want to see him playing like that. If he is, I want to capture it on video.
Overall Benjamin is doing pretty well. He’s still on the ventilator but his bpm (breaths per minute) setting on the ventilator is down to 8 now; his peep is still at 7; and his O2 is at 40%. I know that you probably don’t understand all this but I like to be able to go back and see how much progress he’s made in a week so I’m writing it anyway;) They’ve been trying him on the pressure assisted setting on the ventilator for a couple hours at a time to see how he does on it. So far he’s been tolerating 2 hours. They want to get him to a point where he does it for 48 hours without tiring out and then they will think about extubating him and putting him on CPAP or BI-PAP.
This morning Kyle asked if Benjamin could play cars with him. This is a very loaded question for Kyle as he doesn’t usually like to share his cars with Benjamin. I said that Benjamin was still very sick and in the hospital. To which Kyle replied “Benjamin get better. Benjamin come home already!” I told Kyle that Mommy wants Benjamin to come home already too but that Benjamin is still very sick and has to get better at the hospital yet. I agree with his sentiments exactly. Six weeks has been long enough! I would love to have my little boy home again!