Feb 13, 2012

Which horse?

The night was better.  Not great, but better.  Very little screaming in pain.  They kept him on pain pills throughout the night and helped me reposition him every 2 hours. 

His blood pressure is slowly creeping lower and lower.  His heart rate is creeping up.  His fever is creeping up too. 

But he's starting to wake up.  He's used a few words this morning.  He's about 10% of his normal self, but it's improvement. 

As I studied over the blood tests last night (most of them I knew what they were, their purpose and their reference range) but some were new tests.  If I'm interpreting corectly, seems his liver and gallbladder are VERY sick.  Most of the tests point to very high levels of "liver disease". 

My biggest concern at this point??  That it's the TPN causing it and they will have to take him off of it.  No one has even mentioned it at this point but I am reading handwriting on the wall so to speak.  It seems this is toxic to him. 

So if you're following along with the blog ... you probably had your stomach fall by the thought.  I know I did.  IF we get there ... then what?? 

We must have a miracle.

2:45 pm all day we've been very popular with miscellaneous doctors.

Bottom line with all of them ... he's likely septic.  The blood cultures haven't shown that but everything points to it!  EVERY one of his labs are indicating he is.  He is acting like he is.  His vitals are showing he is.  This is just like last time in December.  He is DEFINITELY not doing well and they are monitoring him very, very closely. 

I got an email from the main doc at the NIH that we were going to see today offering to help. 
I've had several phone calls, emails and text with the director of the CureCMD, the "experts" on CMD offering help. 
I had the GI doctor from Shands asking what is going on and offering help. 

We have a lot of minds on this case.  And right now, ALL of them seem a bit stumped.

His latest blood pressures are 86/42, Mean arterial pressure of 53. 
81/43, map 52
heart rate is hovering in the 150's
Many of the labs are looking like they did last time just before he crashed into septic shock. 

8:45 ... having a hard time writing on this blog today and trying to update everyone.  There's nothing shockingly new... it's just all about the same.  So why so hard?  Because of the handwriting on the wall.  I can do math so to speak. 

At one point today, "Doc" came by just to visit. He is not our doctor while we are in the ICU but will be again when we're back on the regular floor.  I asked him a couple of pointed questions. And he said, "Let's go talk".  We left the room (where the nurses were) and just let me ask whatever I wanted and he shared with me his concerns.  We were on the same page. 

He used the analogy of which horse is going to get to the finish line first.  For most kids with Manny's muscular dystrophy, it would be respiratory failure.  But for him, that horse is so far behind.  There are many other horses that are way further ahead.  At the front of the pack are the horses named, "Running out of viable veins", "Sepsis" and "TPN". 

With each sepsis, it's hitting his body harder and harder.  This time we can't even be certain it's sepsis ... the blood cultures are still negative. (A great sign.)  But he is certainly acting like he is ... so it might as well be.  (Like right now, his hemoglobin is barely above 7 ... they usually transfuse at 8 but they're not doing it yet, holding out to see if his body can react on it's own.) 

And TPN is a problem because it is apparently caustic to his body.  2 weeks ago, when the TPN accidentally got in his arm, do you remember the horrible reaction it had??  Well, it's doing similar things to the rest of his body.  So at what point do they feel it's not worth feeding him with TPN any more?  Then what?  Or they keep feeding him the TPN and it destroys his liver and gall bladder and we deal with organ failure. 

See why I didn't want to write the blog?  It's just so darned depressing!  And in the middle of this, his story is being told EVERYWHERE.  He is FAMOUS in this hospital alone.  Like today the nurse called the IV team to get a dressing change on his broviac.  They asked, "Can it be done in the very late afternoon?"  I told them to say, "It's Manny".  She did.  They were here in less than 5 minutes.  I walk down the hallway and nurses that I haven't met know Manny.  His story is circulating. 

Tonight, Dan and the kids came to visit. He was mostly lucid and was able to say a few words to them.  He cried when they left.  He got so distressed that his heart rate went to 200.  In the ICU, the little kids aren't allowed to come in but they make special arrangements/considerations depending on the circumstances.  They let my kids in.  Could only be about 5 minutes ... but that was enough as it is hard for the kids to see him like this too. 

And I sit in this room ... basically numb.  I am going through the motions.  I am doing what needs to be done.  I am doing my job.  If I let myself go there, it's just too overwhelming of how much suffering he is experiencing.  It's too much to handle emotionally. 

I can't tell you how many nurses have broken down in thinking about him, talking about him.  They try really hard not to ... but it's only natural that people get attached to him. 

Praying the pain pills are enough tonight. 

One day at a time. 


  1. Storming heaven and breaking down myself. I am feeling the kick in my belly of shock. For some reason I was thinking that if they just got the gall bladder out that he would stop retching and then not need TPN anymore but obviously I missed somewhere where the TPN was causing the gall bladder issue and not the other way around. sigh. I am praying so hard for you and Manny. Such a hard place to be in as a mama! Big big hugs

  2. Still praying continuously for you all. For Manny's comfort, for your strength.

    One day at a time, one foot in front of the other.



  3. I just cried. I have never met Manny, but I pray for him all the time. I am praying for you and your family too. May you all be surrounded by angels and all of the blessings from heaven during this difficult time.

  4. Becky Browder NeustadtFebruary 13, 2012 at 11:26 PM

    Oh Beth. I just cried when you wrote how Manny cried when his Daddy and his siblings left. God Bless the love Manny feels surrounding him. God Bless all the medical people who want to help - to figure it out. God Bless you and Manny who are living through all this. All my prayers. You have them. Manny has them. All my prayers.

  5. Praying so hard. Strength for you all. Manny FIGHT sweet boy.

  6. The inflammation markers regarding his liver and gall bladder are common with Sepsis. I doubt it's the TPN. Also, his labs are going to come back negative, due to him being on antibiotics, which will mask a positive results. Praying for Manny!