Saturday, January 8, 2011

End of the Week update and reflections

It's been another long day.  Go figure.  Started his feeds at 2ml/hr mixed with 8ml/hr of pedialyte.  Then we ran the TPN at 25ml/hr.  Then we added up all of the diapers over an 8hr period and are doing IV drips for the amount that is over what we are putting in.  So basically anything over 200ml we are re-giving him in the form of IV fluids.  So currently he has IV fluids, TPN, and his formula and pedialyte running.  He's 1 hooked up little boy.
He had a burst of awake time and we got down on his mat to play.  Didn't take to long before he fell over on me and I propped him so he could check out the toy. 
His lab levels are still pretty low on quite a few things.  Hoping to continue to see those improve but currently he's still not receiving enough protein and calories and all of those things to see huge drastic improvements.
His O2 has been running a touch low for him, but not worrysome.  Tonight his heartrate is ridiculously low and setting off the monitors but now his O2 is back up nice and high.  Go figure. 
His doc did her rounds later in the afternoon so she could check in on how he was doing with his feed trial.  She came in closed the door, and sat down on the floor with us.  I knew it was time for another talk.  And sure enough she did.
We talked, this time I didn't cry.  I'm numb, or maybe just dry and dehydrated.  :)  I'm not sure.  But there were no tears.  I felt like running and screaming though.  Bob and I talked a bit after she left.  About our feelings.  About her conversation on balance and choices that we will face.  We don't yet know how we will handle those choices but it has now been brought to our attention that we need to always keep it in our mind and that there will be more talks.
I want to live in stupid bliss.  I want to pretend like I will wake up from this and it will all have been just a nightmare, a movie I saw showing someone else's life.  But I wake up each day to the beeping of his monitors, the water noises of his bubbler, the swishing of his many pumps, his nebulizer and the RT doing CPT, the nurses drawing labs to reorder his days TPN, and the buzz of the hospital life around us.  It's not a dream, it's my life.  More to the point it's us watching in awe at our strong tiny man fighting for his health and life...

almost forgot pictures.
Eli and I waiting for IR

Eli this morning after waking up

Bob and Eli hanging out this morning

1 comment:

Jancy said...

I wish I could take this all away from you. I wish that wand were in my hand and waving, causing an immediate change in Eli's status. However, I can't imagine God giving Eli anyone more loving, supportive, and smart than you two. I know it's hard going through all of this, although I can't begin to imagine just how difficult it is. You are amazing people and you are stronger than most of us ever dream of being. Please don't try to handle all of this yourselves. Let those of us who are willing help to support you and bring you through these times. Call us if you need to yell, scream, hit something...I'm sure we can handle any words you can throw. So sorry that life has thrown you such horrid curve balls. Know that you are being prayed for every day. God is with you always and he is carrying all of you through this. You are never alone. And I guarantee you in my world (as well as countless others) you are never forgotten!