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.
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?