This is our story....The story of our journey as a family of four

Sunday, March 21, 2010

2 steps forward, 1 big step back...

Well, I know my last blog was so upbeat and there was even talk of home however about 4 hours after I wrote that blog we got a phone call saying that he was septic...Seriously?! we thought.  Never ever had I imagined when we put him into his crib on Wednesday night there was something wrong.  He acted fine, which just goes to show how fast an infection can occur.  He never even had a fever, but I guess after we left he wouldn't eat as well for his next feed.  It was about 6am when he got listless and went apnic so many times that they had to intubate him because a little stimulation wasn't snapping him out of it as it usually does.  He was ghostly in color, I honestly can say I have never seen anyone as pale as we saw our baby that morning.  Heartbreaking.  They did a CBC and of course it showed a left shift as everyone knew it would.  They started him on 3 heavy duty antibiotics before Neuro was even there to tap his shunt.  As we sat there and waited for the results of the culture to come back he was limp...did not try to open his eyes, just layed there still....letting the vent breathe for him.  It was so hard to see him like that.  It wasn't too long before the Gram Stain came back, and it was positive just as they knew it would be so off to the OR he went a little after lunch time. 

They removed his shunt and put in an EVD, which is an external drain.  Sounds scarier than it is...but basically he has a tube running from his head into a large syringe by his bedside and then after the monitor how much he's drained, the CSF goes into a bag.  It does the exact same thing that his VP shunt did but it's on the outside, and they can actually monitor the flow this way.  After surgery he got another blood transfussion, which was much needed, and it pinked him up a little bit.  He was of course sedated from surgery and just wiped out completely.

I know that this is probably horrible to say but for the first time I was afraid to touch him....I didn't want to talk to him because I didn't want to wake him...I didn't him to wake up and have all of this stuff poking him and proding him.  I didn't want him to try to cry and for me to not even be able to pick him up to console him.  I was scarred....for the first time in NICU I was really scarred.  Don't get me wrong, I hated him going in for all of the other procedures he went through, but we were prepared for them...we knew he needed them.  Even the shunt revision...we expected it at some point, it just happened sooner than we had hoped, but an infection.....we were not prepared for that.  Of course we knew that there was a chance but the chance was a so small.

He slept all day on Thursday, Friday and it wasn't until Saturday that he started to stir.  It didn't help that everyday they were trying for a PICC line and giving him small doses of sedation for the procedure, but to be honest I'm not sure if he would've tried to wake up before then or not.  Occasionally he would try to breathe over the vent, but most of the time he just let the vent do it for him.  Poor bub is all we kept thinking.  Yesterday they finally got the PICC line in, sort of.  It took them 4 times fiddling around with it, and 4 xrays to realize that there was no way that it could be used as a PICC, so he has a deep IV in that location so at least it wasn't all for nothing like the other 2 days.  Not only is is head wrapped, and his belly bandaged up he has and IV and now  the deep IV (which just means they can push more volume through) but he has lil pricks all over his body from them trying for the PICCs and all of the IVs....I'm telling you this is the worst our lil sweetie has looked, and felt with out a doubt.

As far as the bug that started all of this....all we know is that the gram stain was gram positive, and that it is the enterococcus bacteria.  When Dr. Li opened his tummy back up to remove the drainage tubing he said that there was more murky looking fluid down there then there was in his brain, and now that makes sense since enterococcus is typically found in the GI tract, and with the tubing going from his belly up to his shunt, it's like a free ride to the CSF.  We are asking how and why, and unfortunately we may never know, but whats important is that we were there, and they caught it early.  I don't even want to think of how much scarier it could've been if we were home.  We know that he is in good hands up here, and we love this rotation of dr's.  His attending, and fellow are amazing.  They really go out of their way to explain and show us things.  And the attending makes sure to get everyone involved that could possibly help Easton.  He had him on 3 antibiotics that he knew would kill the bacteria, but he called Infectious Diseases down to let them make the call of what exactly he should be on.  There isn't even the slightest touch of arrogance about him, he said they would know best so he called them, twice, to get them down there. 

On the up side, last night Easton really started to stir, and "buck" the breathing tube, so they knew it was time to extubate.  It was about 8:30 and he was ready so they did it.  He was restless but took that bink like he has never taken it before.  Even with a sore throat from being tubed for 3 days.  We got to hold him, which is really all that he wanted and even though it was a little scary with the drain, it was so nice to be able to soothe him, to hold him, to comfort him and honestly to give him the only thing he wanted.  I gave him a bottle...only 4 mL, so it wasn't much but they are going slow with the feeds since they don't know where the bug started...but he took the bottle, and of course wanted more.  It was great that he took the bottle because it saved him from another tube being put down his throat. He was alert and just looking all around, as if he'd forgotten what that place looked like. Daddy took a turn with his boy, and I have to admit I got the sweetest picture of them, which I will post soon. Just wanted to let you know that he's back in our arms though! That's it for now...oh I guess I should say that we need 7 days of CLEAN cultures before they will put his VP shunt back in so we just need the antibiotics to kick in, which I am hoping that yesterdays results will be negative today.  But it looks like everything is going as it needs to be in order for Easton to feel better.  Poor sweets.  Please pray for a speedy recovery and smooth sailing from here on our for our little man.  The nurses said they aren't even going to use the word "home" anymore because everytime they talk about it something happens, so they are now going to use the word "zoo" to see if that fingers crossed this is it and we will all be going to the "zoo" shortly. 

1 comment:

  1. Little Easton is in our prayers! What a tremendous ordeal and my heart aches for you guys. It makes perfect sense that this would be so much harder than the back closure and shunt because it is so unexpected and severe. I hope that you guys are able to get enough rest tonight and that the doctors and nurses continue to work very hard for little Easton.