Sunday, January 9, 2011

Sunday's All-in-One update

Sorry for the lack of updates today.  It's been a day that's just kind of passed.  Eli went up to 4ml/hr elecare mixed with 6ml/hr of pedialtye.  The TPN continued at 25ml/hr.  The dirty diapers began almost immediately again and lasted the morning.  We again added up all of the dipes and then anything over 200 gave back in the form of IV fluids.  He lost WAAAY more this time and we are having to give quite a darned bit back in IV fluids.  So the concern is the more we keep ramping up the feeds the more we have to keep giving back in the form of IV fluids.  So at what point do we need to continue again to slow back and figure out what is happening.  Tomorrow he will kick up again a bit on the feeds, only by 2.

His siblings got to come up and see him today.  they were here for about an hr.  It wore him out but he really enjoyed seeing them.  Then some friends brought us up some super yummy food and a gift for Eli this evening.  He enjoyed watching her 2 children as well.

Eli also had a 1st today.  It was his 1st time in 13 months of going out of his room and on a walk around the Peds floor.  His nurse got him a TB resistant mask and made a bed in a wagon and had all the patient doors closed and off we went.  I pushed the wagon and pulled his IV pole along and he loved it.  We walked for probably 30 plus minutes!!

His doc came by this morning as well and we have a plan set out for the week.  We will work on feeds obviously and will begin working on finding a new GI.  She's going to start doing some research and phone calls and such and hoping to be able to get files sent over and have a phone conference by the end of the week.  She is also hoping for Eli to get a day pass on Jan 19th to be able to go have another hearing test in a special booth.  The new neurologist comes tomorrow so we are really looking forward to what he has to say as well.

In closing I have a few thoughts on strength and weakness.  There has been alot of talk on 1 side, and a touch of talk on another side.  I am strong, but I'm not super woman and I do still have my breaking point where I just can't do it.  Sometimes I need help.  Sometimes I need someone else to be strong for awhile because I'm exhausted.  BUT this however doesn't mean I'm weak.  I'm so damn far from weak.  If I appear weak sometimes it's because I'm going thru the hardest point of my life.  This is shear torture and it's painful and it's hell.  That doesn't mean I'm weak, that means that it's hard, really fucking hard.  When I'm "weak" that means that for that exact moment I've allowed myself to 100% feel the emotions and really bear the weight of what is truely happening BUT that also means that someone else is being strong at that exact moment, be it 5 minutes or 5 hours.  Please don't perceive me as weak, for I am far from it.  If you see a moment that to you appears weak, please look at what is happening.  This is life and death here.  Also please don't assume I'm strong beyond all human recognition, I'm far from it.  I need help, I need support, I need to break down and scream and cry.  Call me, text me, email me, mail me handwritten letters, show up and haul my ass out of the room on a walk, do whatever you would want someone to do for you.  Always remember that I'm doing the best that I can and it's a minute by minute process and my emotions may change just as often but right now that's ok.  Just support me thru each step of it all.
Thank you!

Pics from our day!
Tiny after his morning bath

Tiny heading out for his 1st walk on Peds

Emily and Jace visiting

Ben checking Eli out

Ari loving on Tiny


Jess said...

Having never met you outside of stalking your blog, I would have to say...You are in my top 10 list of strong people...that being said, I have a special needs daughter of my own (not as special as Eli) but anyone mistaking you for weak or commenting on you being weak needs their head examined!! Praying for you guys!

PS..If you head to KC for a GI consult, Dr. Freazin and Dr. Li take care of our Madie, and so far they have not let us down (like others have).

Anonymous said...

Heather you are not weak. I find you to be very strong. I am so thankful that our paths have crossed. I know there is an answer out there somewhere. I will pray that is comes soon. Beth