May 18, 2012

Full day

8:30am, Dan calls and says that Luke is the next soldier to fall to the illness that is going around.  So if anyone is keeping track, Dan, the girls and I haven't gotten this.  I find it interesting, it's all 4 boys that have gotten it so far. 
Us?  The night was long.  Every time someone would come in the room, he would SCREAM until they would leave.  He was very, very scared waiting for the next bad thing to happen to him.  But truthfully, this has been one of the easiest admissions so far. 

He has the central line to draw the labs off but usually with a fever, they want a blood culture from the line and one from a peripheral site.  Doc and I agreed that this is likely a flu so the cultures are just a formality.  IF the one from the line comes back positive, THEN we will do the extra needle stick.  But odds are it's nothing so why needlessly prick him?  (He is having a hard time healing and clotting right now and even more a difficult stick than normal.  And the blood sticks they did more than a week ago are still not healed. Not a good sign.)

The specialists have start to wander by.  First was the Neurologist who was the one assigned to us two years ago.  He is the one who gave us the news of his HORRIBLE brain scan and that he would likely not make it to his first birthday.  (I don't feel he made a mistake.  It was the wrong diagnosis but he was going by the other cases that he had seen of similar looking MRIs and thought that is what he was looking at.)  Anyway, he referred us on to a different neurologist once Manny's diagnosis was "beyond" him.  We haven't seen him in like 1 1/2 years.  So imagine his shock to see how GREAT Manny is doing ... sitting, talking, etc.  (All things his MRI would indicate he could never do.)  Why him today? Because this neurologist is covering for our regular one for the weekend.  It was cool to see him again, but I know way more about Manny's condition than he does so he was at a loss of how to help or what he could do.  (Which was to be expected by the way.) 

Next came in the lady to the the Echo for Manny's heart.  Doc heard what he felt was a difference in Manny's murmur.  He wanted specifically to see the Ejection Fraction (i.e. the function of the heart).  And the tech isn't supposed to interpret the results, but she is a friend.  She said it looked normal to her.  (phew).  That is good news meaning that his heart is still functioning like it should.  (With his underlying muscular dystrophy, about 1/3 of the kids develop a significant cardiac condition.) 

As I was typing this, I got the labs from the middle of the night ... uh ... he'll be getting a transfusion SOON I am sure.  Oh my, oh my I am glad we're in the hospital for this! 

Doc came by and stayed for a while.  We discussed the short term and the big picture.  (He is the ONLY one who will do this with me!)  We are on the same page, as usual. 

Short term ... this is likely the flu and we just have to support him through this with respiratory, fever, dehydration, etc.  He's being closely monitored so we're good.  I feel thankful to be here and not doing this all alone.  We're surrounded by people who love him, who know him and have his best interest at heart. 

Long term ... he feels this is a manifestation of the progression of his illness.  It's possible that his hemoglobin and red blood cell decline are "anemia of chronic disease".  He says he'll defer to the hematologist for that diagnosis for sure but that's his guess.  (That is not good news.)  And we're on the same page about the TPN too ... it's the only option we have right now, but it's a very life-shortening decision for him.  :(  
Look how tiny he looks in that bed.

He says we will be getting a transfusion today no matter what.  (Even if hematology doesn't agree with the decision.)  There are apparently new guidelines for adults of when to transfuse but the pediatric guidelines have not been established yet.  So it's gray area. 

Meanwhile, it's noon and Manny is already back asleep.  He hasn't asked to get out of the bed today.  He hasn't asked to play.  He hasn't played with his ipad.  For those who know him, they know this is NOT him. 

2pm he had to go down for an abdominal ultrasound (looking at the liver mostly to see if that is the culprit of our big picture problem).  He SCREAMED and begged to stay in bed, not get in the wheelchair.  He cried the entire way down and the whole time in ultrasound and the whole way back up.  Soooo not like him.  I did a temp right before we left and it was the highest his has been. 

Finally got back to the room (a long 25 minutes or so) and he went right back to sleep.  It's 4pm now and he's still out.  He is very, very pale looking.  Breathing is shallow.  He does NOT feel good.

I am sooooo relieved to be here and not at home with him this sick.  There are times I would rather be home as I feel I can better take care of him than they can.  But this time, I need help.  I need the extra eyes, the machines I don't have, ICU just a few feet away, etc. 

Still waiting for Hematology doctor to come give us the low-down on what they think is going on, what tests they want to run and their proposed treatment plan.  I know that either way, Doc is giving us some blood. 

And again, my brain goes to all those people who willingly give their blood for people just like us.  I used to be able to give  (prior to a health challenge of my own) and I thought NOTHING of it.  Just stop by, donate, no biggie.  Truly, truly never saw it as a big deal. 

I also think back to an Uncle I never met.  He died when he was early 20's and my dad was 16.  Uncle Billy had become a Jehovah's Witness (his wife was) and he got ill, needed a blood transfusion.  He would have lived had he gotten it but his religious convictions prevented him from getting it.  I do not judge him for the decision to stick with his faith.  But I do wonder what he was like.

And it makes me all the more aware that blood can be the difference between life and death. 

4:15 the hematologist came in.  Upon coming in, she was not convinced that he would need the transfusion. Upon seeing him, she knew immediately.  He is pale, not waking up, etc.  It was a no-brainer she said.  She will be doing a blood work up as well.  She mentioned iron tests, blood smear test, an electrophoresis, bone marrow ... but will look at the big picture first to see what all she will order and when.  I like that they are systematic and not reactionary.

4:30 Nurse popped in and said, "You are such a smart Mama!"  She said the labs just came back positive with Influenza B.  I knew it was the "flu" I just didn't know the exact strain. 

5pm talked to Dan and Luke. He's miserable and I can't be there to Mother him!  I feel so torn and helpless.  The "sick" room is all set up with vaporizer, fan, medicines, TV, etc.  I hadn't dismantled it since Sam used it.  And Sam will make a good "Nurse" ... he knows all I did for him and can do some of it for Luke. 

And by talking to Dan, Manny perked up for the first time.  He was actually happy, talking, interacting.  After Dan hung up, Manny asked to sit up and play ipad in his bed.  Yay. 

6pm, I hear the nurses getting all the orders read and prepared that the Hematologist ordered.  This takes a LONG time to do because of all the special protocols for blood transfusions.  Given that we are almost at change of shift, I bet this will be done later this evening.  (Which is fine.) 

6:30 blood was drawn ... lots of blood tests.  All ordered by the Hematologist.  If he weren't about to get more blood, I'd be greatly concerned about the volume they're taking out! But they're about to replace it with someone's much healthier blood so all is good.  I'm very intererested to see the results since they are all tests that have never been ordered before. 

6:45 he is back asleep.  He BEGGED to go to sleep.  At least he was awake for almost 2 hours! 

This blog is already long enough so I'll sign off now and start working on the next one. 

Thanks for all the prayers, notes, emails, calls and support.  We feel you holding us up in prayer!


  1. storming heaven in LA. thanks for updates!!!!!!!!!

  2. I look at sweet little Manny in that big ole bed and I just wanna reach in and hug him to pieces! You too mama! You all amaze me. Praying in Iowa for you all!!

  3. PRAYING for precious Manny (and his momma:)!!!!
    In Him,