Friday, January 7, 2011

Bad day

I apologize yesterday for the lack of updates.  It was an exhausting, draining, barely made it to the end kind of day.
Eli struggled a bit in PICU trying to get his TPN started, and his blood sugar and mag had problems. 
His doc came in yesterday morning and we all talked.  We talked for quite a bit.  We talked about things I have never wanted to talk about.  I never imagined these kinds of conversations.  You see them on TV, you assume parents of terminal children with cancer and such have these conversations, you read stories in books/magazines, BUT you never assume that would be you.  You never assume that would be about your child.  But it is.  It's me.  It's my child.  I don't want to do this.  I don't want this to be our road. 
We discussed Eli being a very sick child and that there is no way of fixing it.  There is no cure, there are no meds, there are no treatments per se.  There is no magic wand.  We discussed how each time Eli gets sick we never get back to our "baseline".  He never gets better.  He never moves past it.  Each time he gets sicker than any of the times before.  We talked.  We talked about living each day to the best that he can, and trying to make as much of each day since at this point nobody knows...  We talked.  We cried.  Then we cried some more.  Our doctors are always happy go lucky, life is good, he'll recover and be all better.  All of a sudden that is gone.  It's now he's sick and fragile and we can't fix it and we need to treat symptoms and keep him comfy and it's not going to be ok.  I don't know if I feel relieved that the doctors are now all on the same page or if I'm terrified.  I don't know how I feel.  I have so many feelings and emotions and I'm terrified as hell. 
We have really surrounded ourselves with Mito moms and all of our friends and family.  so many of the mito kids are struggling and some are at the end of the journey and it's heart breaking.  This is unfair.  It's cruel.  This shouldn't be the struggle that our little kiddos have to endure.  This shouldn't be what a parent has to go thru.  NOBODY should ever have to experience this.  Yet here we sit.  This journey has brought some of the most amazing people into our lives.  People I will forever consider a part of our family.  The lessons I've learned are amazing and beautiful and painful. 

He has one of his normal hospital nurses today so we know the day will go a bit smoother.  They have his TPN mixed better and up and running, and he seems to be doing pretty good with that.  He didn't tolerate 2cc of elecare in his J yesterday so that was all stopped.  We have no idea what's going on with his whole GI tract.  His local GI doc says she can't do it.  She said he's to complicated and she has no idea or how to help and that she can no longer help and see him as a patient.  All righty then.  So we are going to be spending the day to trying to find a GI doc who isn't scared by a medically complex kiddo.

I promise to be better about updates.  Yesterday was just so draining I couldn't post it all. 
I will close with a song suggested to us.  It is the unofficial mito kiddos anthem.  It sooo touched me.


Anonymous said...

Heather I here for you to listen, I know I cant give you the advice you want but I can lend a shoulder to Cyber lean on. I have tears streaming down my face not knowing exactly what to say. I am truly sorry that you are going thru this. My prayers are with you and your sweet family. Sending huge hugs from Canada.

Anonymous said...

Wow Heather. That is a talk that no parent should ever have to go through! That was a shitty thing for that GI doctor to say to you guys. Least she could do is help to refer you somewhere to someone that is not afraid and more knowledgeable. What a cop-out way of not wanting to try to get to the bottom of things or help you guys out so something can be figured out. My prayers and thoughts are with you guys.

Trish said...

Hugs and Prayers to you. I dont have a Mito Child, but do know many. My son has a feeding tube and Eosiniphilic Esophigitis. Along with other "Different-Abilities" If you are ever on Facebook...look me up...

Since I saw Letters to God that has been my favorite song.