Negative is a GOOD thing

Blood and urine cultures that were drawn while Chi's heart was acting up during my 24-hour shift came back... NEGATIVE!! This is great news that his body isn't having to actively fight something other than the ear infection. The bad news is, this is how his body will respond to something as "simple" as an ear infection. He is still having episodes of heart arryhthmias, but nothing as fast as his SVT. However, when he sleeps, every now and then his heart rate will drop down to the 50s before bouncing back up to 80, 90, or 100. Cardiology still believes that this is better than heart rates jumping up to the 250-300 range. Understandable. For now, they will not be switching any medications, just keeping an eye on his weight gain and adjusting appropriately. The plan for discharge to home is still MONDAY!

Speaking of weight, Malachi is now tipping the scales at just under 16 POUNDS!! It's a good thing he's so stinkin' long or we'd have quite the chunk on our hands!

We got our first delivery of home supplies the other day--most of it was related to suctioning his trach and our back-up vent stuff. Not going to lie, I was expecting more "supplies". I still need to figure out how to get trach and g-tube dressings. I need someone to inform me of where his prescriptions will be sent and when I can pick them up and all of that. Our massive oxygen tank will be dropped off tomorrow. Still gotta figure out where we're going to put that.

I also spoke with our home nursing agency. They have one nurse to open Malachi's case and one nurse to start training for him. For whatever reason, they will only be here on days at first and then eventually transition to nights. We're not exactly thrilled with this. At first the one nurse they have assigned to us will work five 10-hour shift and then when they hire more nursing for us, she will switch to four 12-hour shifts during the week. Please pray that we get the nurses that fit Malachi's needs and work best for our family from the beginning. It would just be so much easier! Also, pray that the nursing help gets transitioned to nights quickly so that as a family we can adjust to this type of a situation.

On a good note, Emerson was ALL OVER Malachi tonight. It was great! In the beginning, she was pretty leery of all his wires, cords, and tubes--I don't blame her! But now, she is careful not to touch things that she shouldn't, but always wanting to play with his feet or rub his head or hold his hand. She even laid right down there with him on his bed and giving "BIG hugs!" It was so super precious. See for yourself...

Sleeping boy when we arrived...
His sister quickly took over his tumbleform chair and starting playing with his musical therapy instruments...
So precious...
Someone soon started waking up...
and bring toys to his mouth!
and smirk (smile) at Mommy!!
Emma couldn't wait for her turn to get some Chi time, too!
So loving and (mostly) gentle....

(video as promised)