I haven't written a blog for the day ... I just can't make myself put my thoughts down. Why? Because we're starting to have some difficult talks with the docs. We're not out of options .. but getting close. And with each test, it seems to indicate that another body part has stopped working. I'm thankful he's alive. I'm also deeply saddened by his suffering. I'm reminded that God keeps EVERY tear in a bottle (Psalm 56:8) so that means all of mine and all of Manny's and all that you have shed on our behalf. It counts for something.
What's new? Nothing. That's the problem. One thing after another they have tried in hopes that something will work. When the truth is ... nothing is working.
The truth is ... they have no clue what is wrong with him so they have no way to fix it. I point blank asked the doc what he thought was going on ... liver? gall bladder? other? And he said, "I think it's the bowel". I asked, "Are we talking serious dysmotility or is the bowel dying?" And he just shook his head yes.
They still want to try a few more things before we go to TPN. Many people are curious/confused about what this is.
Total Parentral Nutrition = TPN
OK so entral feeding is the traditional way ... the digestive system (like mouth, esophagus, stomach, bowel) or where the food goes into any of those places. (Like G tube feeding is straight into the stomach, where J tube feeding goes into a part of the bowel.)
So TPN is where it bypasses that entirely. It's similar to IV fluids (most people are aware of that). But instead of going into your veins, the go into an artery. There is something called a PICC line which is where they put TPN into your arm. This is best for temporary access.
TPN typically goes into a Central Line (in your chest, near your collarbone). And there are several types of access. Some are above the skin and some are surgically implanted into your skin. You'll hear about "ports" and such. The type of use will determine which type of access they use.
Now the entral feeding takes the whole digestive tract to help deliver nutrients and eliminate waste. Versus with TPN, it all is filtered through the liver ... which makes it very hard on the liver.
It also goes right into a major artery so if there were to be an infection at the site, it's extremely dangerous as it would immediately be into the blood and the patient becomes "septic".
They do a lot of monitoring of body function while on TPN and you're under close watch (which is good). We might even need to consider some level of home health nurse just to be sure.
Oh, and you can't get it wet so no showers or baths or swimming. (We had just signed up for some water therapy. We live in Florida for crying out loud. We go to the beach and we have a pool. So this was news that bothered me too.)
Finally, the big deal about TPN is ... for him, they feel it would be quite life shortening. He'd stop retching so quality of life goes back up, but eventually, it would become a problem and too hard for his liver to take. So they are taking this very very seriously before they go this route. And I appreciate that. If we go to TPN, I need to know we tried everything else first.
Here is my Facebook status for Wednesday morning:
Thanks for all the prayers and kind words to my last status. Last night was rough ... he normally sleeps but he didn't, he screamed a lot. I think I'm most struggling with the feeling of "impending reality" versus wanting him to be restored and healed. And I feel trapped between those two worlds. Then throw in the fact that I don't want him to suffer (and he is) and my Mama's heart can't bear to watch him struggle. He still has a lot of "happy" moments too, mostly those. But the bad is bad and I stand by watching, helplessly, uselessly with uncertainty of how to proceed. And just wanting to wake up from this nightmare.
So why is this so "heavy"? because it means another body part has shut down. We're going backwards. I am completely good in knowing God is kind and loving and merciful and still in the healing business today. We are still standing in faith for that miracle (or series of miracles).
I also know that God sees the big picture and we only see in part.
I also know His ways are not always our ways.
I also know that Manny is in the palm of the Lord's hands.
I know that live or die, Manny has a glorious testimony.
So what's the struggle? I am his Mama. If I don't fight for him and for his life and his quality of life ... who will? It's my God-given job to feel every birth pain, to cry when he cries, to hurt when he hurts. It's my responsibility to protect him (so imagine how I feel every time I subject him to another experiment or treatment or IV stick ... I feel like I'm letting him down, though I know it's not true ... but it FEELS like it).
I am the one here in the middle of the night when he yells out, "Mama, help me". I'm the one here when he says, "I mad" when they're doing something painful to him. I'm the one who tries to help him breathe again when he's choking. And I'm the one to console him when he can breathe again and says, "I choking." And I can't explain to him why, just try to comfort him.
And I wouldn't trade this job for anything else in the world. It's just that some days it feels like I didn't get all the manuals for this. I didn't get all the super powers I clearly need. I missed the memo about how to proceed. I wasn't equipped with a heart guarding vest that I feel I need some days. I didnt receive the extra brain power I will need. And no one told me to buy stock in Kleenex.
But what I was given was a love for this little man beyond words.
And THAT proves I'm the right person for this job ... I'm his Mama. So I suck it up and get on with another day.