Oct 15, 2011

Some explaining

Thanks for the prayers.  The calls.  The emails.  The comments.  They mean a lot to us. 

I should address a few things and clarify a few things. (Tired Mamas don't make themselves as clear as they think they do.) 

Manny is on TPN via a PICC line.  This is like iv solution but has more to it than just the water and electrolytes.  People can live on it for years.  The PICC line is in his arm but threads to near his heart.  They put it in via an ultrasound.  Then they check the placement of it with an xray machine.  His was 2 centimeters too deep so they had to back it out and rebandage it. 

(And for the record, they said he was a very difficult stick even with the ultrasound ... no wonder those nurses have a hard time with IVs.)  They gave him a little ativan for the anxiety and that helped a lot.  They let me in and I just had to wear sterile outfit like the medical team. I wasn't prepared for all the blood and how long and wirey the picc line would be. 

For now, there is nothing going in his GJ tube.  No formula, no pedialyte, nothing.  Even meds are going to be given via the PICC line for the time being. 

The docs want to keep looking for solutions for why his bowel isn't functioning.  I am ready to say enough is enough for now. 

A person can use a PICC line for about a month before it has to be changed out. So for Manny, they might keep the temporary one and then eventually change to a more permanent one but not sure when that would happen.

At some point, he will end up with a port (under the skin) near the collarbone.  I had said before that it goes into an artery and I misspoke that.  It goes in a vein still. 

Next, many people are being very helpful in suggesting types of formula and alternate milk sources to try.  So here is a list of things we've already tried.  (This might not be all of them as I'm doing it off the top of my head.) 

Pediasure, Peptide, Peptamen Jr, Peptamen Jr 1.5, Elecare, Compleat Pediatric, Pedia Smart, E028 Splash, Soy, Almond, Rice and Breast milks.  They all have the same effect ... just to varying speeds and intensities. 

The only thing that was going down was Pedialyte and even that started to have some troubles.  That's why they chose TPN for him.  The only conclusion one can draw is that the brain has stopped telling the bowel what to do.  It's in essence unusable.  This is NOT a part of what typically happens to kids with his disorder so it's something unusual. 

His condition is very serious and complicated.  He will live though and no way to tell how long before this starts to affect his liver or get an infection.  We're also concerned about the tapes ... they have to bandage this thing onto his arm and it's a lot of tape to hold it in place.  He's so sensitive to them ... that can be a source of infection in itself. 

So like I said ... this is very serious. 

And to state the obvious (some people weren't understanding this).  He eats and drinks NOTHING by mouth.  He hasn't since 8 months old and they feel he never will gain that ability.   He was being fed into his stomach until that quit working.  Then he was being fed into his bowel and now that has quit working.  So the only other choice for nutrition is via the veins. 


  1. I've been a lurker for a while, but I am an also an adoptive mom (3 from China), bringing two 7 y. o. boys home about a month ago. I think one may have hemifacial microsomia (like Zoe, right?), but we'll know more after a consultation at Shriners Hospital. Anyway, I'm writing because I see so many similarities in gut issues with Manny and a a 2-3 y.o. girl from our church who has mitochondrial disease. She has poor motility issues and is also on TPN (among other things!)...and also has skin sensitivities to tape. They are also forever running to the hospital and trying to figure out how to juggle the other kids. Not saying Manny has mito issues (though I suppose it could be possible), but you can check out her blog if you're ever looking for a (Christian) kindred spirit who can relate or even just to find out if there's any nutrition or tape that's working ;) Hang in there. http://terratalking.com/category/kendall/

  2. Oh man. Just read the comment above and I kid you not the other day thought the exact same thing. Beth I am so sorry this is going on. I wish I could fix it all. I will cry out to God on you and Mannys behalf. Do you need anything? My friend told me that having medical kids and doing hospital stays we get PTSD, a way of our brains protecting itself. I told my doctor what she said and she agreed. I barely remember the first year with Noah. I pray that Manny is healed and this is all just a distant memory. Be blessed my friend