Jun 18, 2010

NOT for the faint of heart (pics and description); plus a rant

This blog is coming with a warning label.  It contains pictures that are not suitable if you have a weak stomach and graphic nature of the content.  But for those who would like to know about and see his wound now, here goes. 

You can see in the one picture with my hand just how tiny he is.  And just how big this main owie is. 

The bad news is ... it's spreading still.  The area around the gtube is spreading but he also has new sites of owie.  The other side of his tummy is starting red blotches.  He has 2 strange blistery looking things on his ear. 

The GI was here recently and he said this is cellulitis AND his gtube is leaking AND there is some other kind of staph.  They sent out a culture to see what it is since it's now ooozing and not just red.  The GI also wants to run an ultrasound on this gtube site to see if there are any absesses in or near the area.  He said that if that is clear, he wants to give Manny's tummy one more day of rest and then he can start back on feeds tomorrow.  But if it looks bad, they might have to do surgery. 

As I type this, he is laying comfortably sleeping next to me on the couch.  He looks so pitiful with all these tubes in him - including one in his head.  That's the IV line where his fluids and meds are going in.  He also has the worst stinch coming from the gtube site now.  And his little gown is needing to be changed often due to the skin peeling and the oozing blood. 

And sadly, he has the little shaky vest (that he LOVES normally) twice a day to prevent him from getting pneumonia.  Well, it goes around his tummy ... you guessed it, right across his gtube site.  We normally protect it with a folded diaper or a foam insert.  Well last night, he was crying about half way through and that's not like him.  We stopped it early and when I removed the diaper, it was blood soaked.  OUCH!

The Pastorial Care Volunteer came by a little bit ago. She was inspired by his story and she was a nice lady.  But somehow, I am getting very "tired" of sharing my story like this.  I mean on here, I get to choose what to say, when to say it, think about it for a while, edit it and then send it out.  When people corner me here at the hospital or in real life, I feel obligated to answer their stupid questions.  And they don't realize ... THEY might be asking it for the first time, but it's the 100th time today that I had to answer it.  If it were something minor like why his arm is in a cast ... then whatever.  But these are questions that always end up with me having to say he was diagnosed with a terminal brain disease.  And quite frankly, I don't like saying it.  I don't like thinking about it.  I don't like talking about it.  I don't want to deal with it.

(EDIT:  But these are the docs and nurses who are caring for him and I feel like I have to tell them.  But it makes me wonder ... can't I just put it in the chart?  Do these people write anything down?  Strangers I have learned - for the most part - how not to over share.  But this environment is tricky.)

I would like to sit here in my hospital room without having person after person after person come in and ask for his story.  I had to tell it to the different doctors on Rounds.  The GI.  Each nurse with each shift.  Each PCT at each shift.  Each respiratory at shift change.  The social worker.  etc.  etc.  I'm seriously thinking about writing it down in a nice, succinct way and putting it on the door.  READ IT before you come in.  If it doesn't answer all your questions, then feel free to ask.  But I don't want to explain the whole thing every time.

And the whole emotional thing is just too much so I start to tell the story in rote form.  I'm disassociated from it as if I'm ordering off a menu.  I just rattle off the facts, the details and that's it.  I don't have the energy to slop through the emotions of how we felt when he got diagnosed, or whatever. 

So far, I've been very kind.  I'm just worried that one of these days, some poor unsuspecting person will walk in and ask a simple question and I'm gonna lose it on them!  (Hope not, but it's a posibility.  And if I do, I promise I'll blog about it! LOL) 

OK ... rant over.  Thanks.


  1. Beth, it would be a FANTASTIC idea for you to type out something and have it to hand people. You shouldn't have to retell his story over and over a million times. I know how that goes even just from Abby's hospital stays, I have to try and explain her weird condition a thousand different times and it gets old. And it especially gets old when I get the "looks of pity". Ugh. I always think "Don't you people write anything down in her chart?" lol But really...you should consider writing something out and then when someone asks you, hand them the paper and nicely ask them to read it. Your energy needs to be on Manny, not on people with a zillion questions. Hugs and love and prayers to you. You are doing a wonderful job.

  2. Oh my friend, first ....big prayers continue going up for your sweet boy. Bless his heart. And prayers for strength, wisdom and guidance for you. I think if you don't like telling people he has a terminal brain disease. Then don't. That's your right. I'd say, "He's a very sick little boy with a slew of problems, right now. Please keep him in your prayers." Period. Sending you hugs and love.

  3. I totally think you should write it and put it on the door! It would be a great stress relief for you!

    Bless his little heart, they need to fix his little tummy and fast! If not they're going to have the mom brigaide coming to help you kick butt!

    Much love and hugs to you,


  4. Yes, write it out or have some of those free business cards made with your website

  5. Poor baby and bless you both! I hope that they fid out what is going on so that these "owies" can heal. I will pray for healing and relief from pain for little Manny and some answers and peace and quiet for you. Love and hugs

  6. His would look painful. I hope he turns the corner today and it starts to get better.

    Oh, I feel your pain about answering questions. Do what you have to do in order to save your good energy for Manny and yourself. (even if it means you become known as the cray lady in the Room 222. LOL) You have no idea how much I'm thinking about you.

  7. YES! Wonderful idea. Write it and post it. If they ask, you can point to the posted note. You *must not* keep expending energy and emotion and words in pointless exercises to please nameless people. It needs to be saved for the ones in your life who need you. And who cares what the rest think!

    Take care. I'm aching for you.

  8. In our somewhat limited hospital experience with our kids I found that the doctors and nurses and therapists ask each time because they want to be sure that you understand everything that is going on. It's not that they want to hear all the details to know the story or satisfy their curiosity (though that may play a part too). Maybe there is something you can say to assure them you are up on all the facts and understand and comprehend everything so you don't have to continue to repeat it. I think I finally started saying "Why don't you tell me what you know and I'll fill in the blanks?" Praying for you and wishing I could be there for you.

  9. Beth,

    I can not imagine the pain that little guy must be in. Thank you for sharing so that we can pray for Manny. You are so right...they need to read the file and allow you to be the one asking the questions. I will pray for Manny and that God gives you strength. Big hug!!!


  10. Roberta Fuller
    Dear Beth,
    What a beautiful family you have. Manny is in my prayers. Stay strong.Do what's best for you.
    If writing things out relieves some of your stress then go ahead and do it.
    Roberta - a friend of Doreen Kerner