Jan 18, 2013

Why does this make me cry?

There has been a lot to say lately and I’ve even attempted to write blogs about the latest happenings but …  (Let me back up)

One of the great things about going to the hospital so often is that we become friends.  We want to see more about each other’s lives.  We start to share emails and phone calls.  We become friends on social networking sites.  Etc. 

So my blog used to be just random “Reflections”.  Random thoughts or experiences or feelings.  I rarely would edit myself.  I would say what was on my mind and heart and just put it out there to the Universe.  Now, I tend to be a fairly kind and diplomatic person.  I tend to try to say things from a positive point of view.  I also believe it’s not ever a good idea to put something in an email or blog or text that you wouldn’t say to the person.  So with those general guidelines, I would just write my blog. 

But now?  I feel guarded.  I feel like I have to be super careful.  So careful that I’ve said nothing.  And that leaves me with no place to put my thoughts and feelings and reflections.  (Well, I guess I’m reflecting now.) 

Not sure how to rectify that because I know I have things I want to say.  There are questions you probably want to ask (but don’t want to pry). 

So where does that leave me?  Unchartered territory. 

I will TRY to continue to put down my feelings and thoughts.  I will try to do it with dignity and grace.  I will try to do it with kindness and mercy.  But I will again start to share the story of what is going on with us. 

So with that in mind … 

We got home from the hospital in late December.  He had another unexplained fever.  With those, we have to treat it like it’s a line infection until proven otherwise.  It was ruled out and we went home. 

I already wrote a post about how torturous that hospitalization was in this post: http://destinyshousechurch.blogspot.com/2012/12/discharged-now-what.html

Several weeks have passed … we have done NO feedings.  And he’s GREAT.  No coughs, no breathing troubles.  Nothing.  I feel a huge weight lifted off my shoulders but it’s looming.  I have made all these decisions with just my pediatrician.  The GI does not know we have stopped the feeds.  The GI thinks I am scheduling with the surgeon’s office and am continuing the feeds. 

Meanwhile I have been connected with the Palliative Care Team.  Now before you go and get all confused, this does not mean what you probably think it means.  They also deal with complex and long term care.  THAT is the reason we are with them.  They do a wholistic approach to medical care and that’s what I needed.  The Doctor was great and said we needed a Care Conference set up.  We have been waiting for that conference.  As of today (1/18), it’s been 5 weeks since the idea was first brought up and no meeting yet.  So I felt like I was in limbo.  It delayed the need for the surgery consult but it also means I’m flailing on my own out here with GI decisions. 

Yesterday, I contacted the Palliative Care Doctor and asked how to proceed.  As I wrote him, I was in tears.  Clearly, the whole conversation struck a nerve.  I’m NEVER in tears over this stuff … except I realized that back when I wrote the last post, I was crying then too.  So I’ve just been on “pause” with the emotions of it all and while I started to talk about it again, I tapped the same emotions. 

The PCare Doctor called me and thankfully by then, I had my emotions back in check.  I was having a hard time saying what I wanted.  The whole situation has gotten to be a huge mess!   No answer seems like a good one. 

After all was said and done and the proverbial dust settled, I was able to sort out why this is so hard.  And it’s complex and too much to really share here.  But one piece I will share. 

Bottom line … without Divine Intervention (which we’re praying for), Manny has two main issues that he faces that are terminal.  The Muscular Dystrophy causes his lungs to be weakened and these kids tend to die of respiratory failure.  That can come when they are say 10-20 and their lungs just give out.  Or it can come from an infection (cold, flu) that just gets ahead of the lungs and takes them out. 

The second condition is the TPN and Central line.  A body was not designed to get it’s nutrition this way.  It’s very hard on the body. Some people can live on TPN for 30 years or more.  And others it takes them out early.  What’s the difference? No one knows.  My personal theory is that in Manny’s case, whatever causes him to not be able to metabolize food the normal way causes his body to not metabolize this correctly either.  He is showing signs of liver failure.  That’s permanent.  He’s not a candidate for a liver transplant.  You cannot live without a liver.  Secondarily is the central line itself … it’s an IV that resides right above the heart.  So any infection that gets in there can be potentially fatal.  Remember December 2011?  He barely survived that line infection!  The AMAZING news is that he has not had one since.  Precautions and protocols and prayers have pulled that off.  But it’s always lurking. 

So that’s the big picture. 

Throw in the eating issue and it causes BOTH of these issues to go into hyperdrive.  If we could get him eating and get him off TPN entirely, then we might be able to have a fair discussion.  But the truth is, he wasn’t able to handle even 5% of his daily intake before it sent him into severe respiratory distress.  We see him struggle for breath.  I have to hear him beg me, “Help me Mama”.  It’s torture on him and us.  I’ve put bits and pieces of it on the blog. 

So basically … I was in tears because I came to a decision.  I chose that I would rather him die of liver failure than respiratory distress caused by attempting to eat. 

How’s that for blunt? 

I said officially STOP TRYING TO KILL MY KID. 

And I was heard. 

The PCare doctor called the GI that I wanted to be dealing with.  He told her the updated situation.  Said I would rather be under her care than the doctor I had been working with (the one pushing for the surgery who said he would “NOT babysit TPN”).  She agreed.  And it was done. 

And I cried some more. 

That’s a lot of responsibility I just placed on my shoulders.  I cry as I type this now.  I can’t describe how final that seems.  How ridiculous it is to make a Mom decide between eating and breathing.  How impossible the choice. 

But it’s done. 

I still haven’t made an appointment with the GI who agreed to take us on.  (I know her well, she is the one who almost always sees us when we are in the hospital but she wasn’t officially our doctor but is now.)  I don’t know why I hesitate.  But I just am not ready to face the next steps I guess. 

As I sit here, Manny is playing beside me in his chair.  He's playing with trucks and tractors and trains, just like any little boy should be doing.  He’s making train and noises.  He loves to crash his monster truck into other things and then say, “Oh, that’s gotta hurt!” He makes my heart smile. 
Photo: Manny says thanks!!

I love the feeling of peace I have when he is off food.  I know that sounds completely insane but it’s honest.  When he’s on food, I have to sit and watch him like a hawk.  He starts to gag silently and loses his breath.  He starts to aspirate it and he can’t catch his breath.  He then loses his ability to breathe right (day and night).  He needs oxygen and even that doesn’t help.  His heart rate goes dangerously high.  He begs for help.  Etc etc. 

It’s torture.  On him and us.  And I can never take my eyes off him.  Every minute of the day I’m scared if he’s going to survive the day.  Scared I might need to call 911.  I don’t breathe because he can’t. 

And when he’s off food, he is normal.  There are no scary moments.  He can breathe.  He is just a little boy playing with his toys.  I am at peace. 

It’s something I’ve NEVER been able to get across to ANY of my doctors.  Just how drastic the difference is.  How complete the transformation.  How different the quality of life is … for all of us. 

And so I chose peace. 

I chose breathing. 

I chose to have more moments of playing happily at his high chair. 

So why does this make me cry? 




  1. So, here in Vegas we will pray that his line stays free of infection and that his liver will endure more than we might expect from a tiny little boy's liver. As for you, Beth, go ahead and cry. Some of those tears are likely tears that you have stored up for so long. Some are pure grief. Some may be relief at having made a decision--a hard decision--but one that makes all kinds of sense to me. He is a lovely, precious child and, in the end, he will have given so much to so many. Thanks for sharing--for sharing Manny and your other kids and for sharing this challenging, often painful, but hope-filled life story.

    Carolyn (in Las Vegas)
    Mother to Joy Lin (adopted from Hefei 1997)

  2. Ohmhoney I'm crying with you and I so get it!! Our kids are so delightful and like anyone just want to be happy and pain free. They want to be children. We have to do the hard thing and be grown ups when all we really want is those moments of peace. You are doing the right thing. I truly beleive that !!!! I'm going to be downin the dirt honest with what I think. I think I would have tried like you have and picked the lesser of the two choices. The one that gave e more time. The chance of choking and aspiration is so much more likely to do damage in the right know. It's a horrible choice no two ways about it. We are here for you and support you in your decisions when there is never a perfect one. Blessings for you and your family honey. Xoxoxoxox

  3. Im guessing they are tears of relief of finally making a decision and being heard, of getting the GI doc you wanted, of no longer to schedule a surgery you knew would not benefit him and of knowing you have more days of peaceful playing to enjoy.

  4. Becky Browder NeustadtJanuary 18, 2013 at 2:04 PM

    You cry because you had to choose. To make an impossible choice. But I can't imagine another way. I know you have made the best and only choice. Thank you for giving that precious boy the sweet times he is enjoying. All any of us have is here and now. And that's what you have given him. The best here and now. xoxooxox

  5. I know exactly what you are going through! My son will be 2 on March 5th. In February of last year he was also diagnosed with Merosin Deficient Congenital Muscular Dystrophy. He is also having feeding difficulties. Just this week they tried administering a feeding tube through the nose but he pulled it out. He now has a consultation appt. sat up on January 23rd for a G-tube. We can't decide if we are making the right decision for him. A lot of the things you write about hit close to home! Thankfully, he has not been hospitalized for any reason. We keep him home as much as possible to avoid illnesses. I am home with him 24/7. But I love every minute I have with him! He just recently learned to scoot on his behind and is getting into everything! Little things like that, puts a huge smile on my face. Just knowing he has a little bit of independence. If you have a day you are struggling, please feel free to drop me a message. Stay strong and love every minute!