The Journey of a Sweet Little Boy and His Special Heart

Thursday, December 19, 2013

One step back one step forward

That is how the last 24 hours have felt around here. Let's hope now we can keep taking steps forward.
So here is the scoop for now...
 Logan was transferred out of the ICU yesterday to the step down unit.  Unfortunately since they are crazy busy around here we were moved to a shared room.  The family we shared with was as sweet as can be, and were not a problem at all, but their baby was 10 weeks old and cried like a baby at that age should who is being starved all night in preparation for surgery today.  My heart went out to them, so I tried hard not to get frustrated at our situation, it was out of my control.  Logan and I didn't get a whole lot of sleep.  I requested first thing this morning to be moved to a private room if at all possible.  Our wish was granted.... hooray!  We are now in a super quiet, private room.  Funny story though, at 4 am when the baby was crying Logan was wondering what in the heck was going on.  He asked me to make it stop.  As we were preparing to move rooms this afternoon they moved in a new baby to our shared room and he covered his ears and said, "I don't want to hear a baby cry."  It was the cutest little baby only 2 days old and Logan wouldn't even look at him.  Our new room is WONDERFUL.  I am trying really hard to focus on the positive.
Logan has had good moments and not so awesome moments.  He is exhausted and just simply making him sit up wipes him out.  Physical therapy and Occupational therapy keep coming to work with him, he is not a fan of them.  I was starting to get worried with the lack of progress we were making, but then this afternoon we have finally started making progress. 
Not to give too many gross details, but Logan just needed to poop!  We finally took drastic measures today and had to do an enema... we had tried everything else, but nothing was working.  It finally worked so we are hoping he will eat now.  Since Sunday night his total food intake is probably the equivalent of one strawberry, 15 Fruit Loops, and some applesauce.  He threw up Tuesday night after trying to eat something and has been turned off to food ever since.  We have ordered him everything you can think of, but he just doesn't want to eat.  He is drinking a little better so that is the most important.
We have tried to get him sitting up and out of bed, but he cries that it hurts too much.  We finally had to do some tough love last night and made him get up.  After some coaxing and helping him see he could do it we finally had success and got him to the toy room.  This lifted his spirits a little.  It also got his chest drain tube moving.  We aren't sure if the drain found a pocket to start draining or if he is accumulating more fluid around his lungs, but his drain tube is draining almost triple today what it has any other day.  I am trying to stay positive, and not let this panic me.  The doctor's aren't too concerned, but aren't ignoring it either.  They will know more after his x-ray tomorrow morning.  Getting post-fontan kids up and moving is really important so fluid doesn't sit in their lungs and Logan has been very sedentary so we hope it will help now that he is up and moving more.
They have a Lightening McQueen car that got him out of bed today.  The physical therapist was adamant he try to walk.  He took a few steps and was pretty proud of himself.  We made it back to our room and he barely got back in bed before he was asleep.  It just exhausted him.
We thought he was on the up hill after seeing him play so well, but then he woke up and was absolutely miserable and required a "rescue" of morphine to get things under control.  Since then he has done better.
So we have good moments and hard moments.  Logan continues to be so sweet and polite to everyone, but is getting less trusting of anyone who walks in the room.  I really hope his x-ray shows improvement tomorrow and his drainage slows down.
I got a lot of pictures yesterday and today I will share.  I do this for my family that I know wishes could be here with us. 
First attempt at sitting up yesterday.

I am so glad someone else had to be the bad guy.

He stood up for like 5 seconds.

Our reward was a snuggle with mom.  I say our reward because this was the first time I really got to hold him.

 A trip to the toy room after we were transferred out of the ICU.

Keeping up on our oral hygiene
More snuggles this morning

Physical therapy again, this time we took a few steps.

He was so proud of himself, he wasn't sure he would be able to walk.
 The best pic of all he is SMILING for the first time since his surgery.
Exhausted after playing

Rested and right back at it.

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