So very hard

Thursday we did an Upper GI Endoscopy, expecting normal results.  All went well with the procedure and the doc said all looked normal.  He took a biopsy of the stomach and duodenum just to be sure but it was as we expected.

Today, Friday, we're going to switch to TPN ... they're calling it temporary.  For now.  As I type this, I am waiting for the doc and his thoughts today.  I know yesterday he seemed a bit discouraged, like we were running out of options. (I already knew this.)

You see ... God prepares my heart and soul for the things to come.  I'm not sure if everyone has this experience but I do. I get "feelings" of what's coming and it's a way to get adjusted to it before it happens.  I've learned to listen to this little "voice" (no, it's not audible).  For many, many days now, I have had the feeling that we're headed to TPN.  I know they are saying it's only temporary, but I have that feeling.

So yes, I know that this is what needs to happen.  Yes, I know it will make certain parts of life easier (no constant IV sticks, easy blood draws, etc.). I am aware that this is going to make the retching stop and probably help him not aspirate.  He will not need the salivary surgery.  It will be easier on his heart and respiratory system.  Life improves! 

So what's the problem?  It's another loss.  I can hardly breathe when I think of the things Manny has already lost.  Here's a short list:  A birthmother, a birthfather, his native culture, his native language. He lost the ability to drink from a bottle or eat with his mouth, most of his stomach, then all of the use of his stomach and his bowel. He cannot move. I don't know when it will hit him but some day I'm sure he will be not very happy about not being able to run, jump, climb, play ball, etc.

And yes I know that he's gained so much too! I get that. I'll have to write that blog some day but for now, another loss seems HUGE and I am not able to do anything to stop it.


And today's loss is ... another loss.  It's a huge step in the WRONG direction.  When he went to G feeds, all he had to do was gain the ability to swallow again and he could again eat.  The he lost his stomach's functions and he had to gain swallowing and get the tummy to work again.  Now we've lost bowel and he'd have to get ALL of that back just to eat. 
 
I know kids who have lost all this and are perfectly FINE with it.  They don't care.  But Manny DOES.  He is always asking to have something to eat and drink.  He WANTS food.  I've started hiding in the corner of the hospital room so he doesn't see me ... it's soooo pitiful.  He has never been able to eat this food but he often asks for a hamburger and chicken nuggets! 
 
There's a part of me who is greatly disappointed in the fact that our ways are not God's ways.  HE could heal Manny in a nanosecond.  He could touch Manny and we walk out of here and grab that hamburger on the way home.  So I get disappointed when our strides are backwards. 
 
His disease is not a progressive one.  We're not supposed to lose functions.  This isn't typical with Merosin Deficient Congenital Muscular Dystrophy.  So something else is going on with Manny too.  Because this has certainly been progressive. 
 
And with each new loss, I wonder ... what's next to go? 
 

 
11am ... Doc just left ... said we'll try the TPN, slowly crank it up and see how he tolerates it. He still hasn't given up on using the J for feeds, he is just not sure what else to try yet. He said, "I'll be on call all weekend" ... which is code for we're not leaving any time soon. I'm considering how much longer I should let this continue. My intuition says it's almost time to go home and get on with our new normal.


In a little bit, Dan is coming with Zoe for a quick visit.  Then he is going to take both girls (Zoe and Kaley) 2 hours away to visit his sister and her family.  Kaley has been quite conflicted.  She wants to stay here and help me but also wants to go have fun and see her cousins. 
 
I have left the decision completely up to her.  Why?  Because I NEED her here.  Our lives are so much better by having her here.  I can take a shower, go get lunch, get some hot tea, etc. without Manny completely wigging out.  She is also wonderful at playing with him. 
 
At the same time, she's a kid.  She deserves to have fun and to get outside and play and have a life.  And I want that for her.  
 
With much distress, she chose to go with Dan.  So we packed her up.  
 
This is going to be a long, quiet weekend. 
 
2pm Dan and Zoe arrive after a longer than expected trip due to traffic.  Just as they got here, they were doing the ultrasound on Manny's arms to see if they could find a decent vein to use.  He cried so hard that they decided to give him a little something (ativan ... lowest dose possible) to help his anxiety.  
 
I was allowed back in the room with him and he cried the whole time.  It was less crying than with the IV sticks (due to the meds on board) but you could tell when it hurt.  This team does basically only PICC lines and the main person said this was a HARD stick.  Even with an ultrasound to SEE the vein, she was having a hard time.  He has so very few veins already and then they're weak and "spindly".  She believes it's because of lack of use of his arms and legs.  The veins are atrophied.  
 
Much blood and many tears later, he has his line in.  We got back to the room and he just hung out with Daddy for a while.  Daddy is not the type of man who cries a lot or easily and sorry to out you Dan, but I could see tears just inside those eyes.  
 
Well, soon after (about 4:30), the sedative drug knocked him out and he's still out at 9:30pm as I type this. (wasn't supposed to do that).
 
6:30 Dan, Zoe and Kaley left. Kaley was so conflicted that I finally had to just basically tell her that Manny and I would be fine.  She deserved to go have some fun.  I could tell she was about to cry as she left.  She wanted to be here for us.  I assured her we would be just fine and I'll tell her all about what she missed. 
 
So now I am sitting in a quiet hospital room.  Since Kaley has been here this whole time, I have had some one to talk to and play games with and chat with.  We just hung out after Manny would fall asleep at night.  Tonight, the silence is very stark.  
 
I guess I need some reflective time.  
 
I have been holding my very weak baby wondering where we go from here and how much more I can/should put him through before we say "Thanks for trying so hard, but it's enough."   
 
So very hard.