Thursday, December 29, 2011

Didn't make it

We tried really hard to keep him home for Christmas, he was fighting and suffering since the tuesday before but was ok..but by Saturday it was clear that the pain meds were not enough. They had already increased the methadone that morning and told me try not to use the diluadid aaa much for fear of it making his episode worse.
We did dinner for the family that night, and presents for everyone except Santa gifts. Poor Zach wasn't even awake for more than ten minutes of it and didn't have the energy or interest in any gifts or family. By 9:00 that night (christmas eve) I was on the phone with his pediatrician, the pain was worse and he was really out of it. So we were sent to the hospital :(
Luckily we got one of our favorite nurses taking care of him and they started him on iv diluadid every hr as needed for pain. They did x rays and ultrasounds, but they revealed nothing. His gallbladder has developed some sludge but thatnis normal for being on TPN and no enteral feeds. His blood counts had dropped yesterday so he received a blood transfusion last night. They also were checking into his anemia conditions and for now have decided that it fits more with chronic disease anemia and he will just receive transfusions as needed for now. He could get iv iron infusions but they feel the benefits do not outweigh the risks right now.
As of today, he is really congested..he probably just picked up he cold that daddy had the week before christmas. He is also still puffy in his face and belly, still nauseous and has already thrown up a couple of times and still having breakthrough pain. The plan is for the dr's to call Pittsburgh and try and move him up there to finish evaluation and to help with pain/ vomiting control.


  1. I continue to pray for all of the family. Hopefully there will be some good news about treatments very soon. I'm praying for a miracle and know our God can do it.
    I'm so sorry about Gus, Kay and your father. Gus was my uncle, and Kay my cousin. We will certainly miss them.

  2. Hi Crystal, just noticed youre following my blog, thanks for stopping by. Learning more about your sweet little boy, sorry he's struggling. I hope he is doing better tonight. Mito is such a cruel disease, Hugs and prayers for your family.

    (I dont see where I can follow you, but Ill try to keep updated, hugs)

  3. ps, Zach's button looks great on my blog :)