Thankfully, today ended on a good note...not medically speaking, but Cooper was happy and giggling.  That made the day so much better!  I don't really have any more news to update on at this point.  He had a CT today to check for fluid pockets or obvious issues.  It all looked okay.  He had to have a ton of contrast leading up to it and that caused him to barf and his belly to blow up to ginormous sizes.  He has an area under the blackened dead area of skin along his incision that is now starting to open up and ooze puss that smells like poop.  Awesome.  The Fellow just came in to tell me that the oozing is coming from a pocket of fluid that is within the skin around the incision.  That means he has an incisional infection.  Double Awesome.  The going theory on why my kid keeps blowing up like Violet in Willy Wonka and the Chocolate Factory is that he basically has NEC (necrotizing entercolitis) in his small bowel at the mo

There is a whole lot going on here the past couple of days and still no real answers or solutions.  Last night, Cooper spiked a fever.  So far cultures are negative, so that is good.  Every test indicates that Cooper's small bowel should be working, but it just isn't.  This afternoon, after only getting 5cc an hour for a few hours, Cooper's belly blew up and got very hard.

Cooper is hanging in there.  He is still having a lot of vomiting and belly pain.  We are back on 5cc of feeds because adding it hasn't made him barf any more frequently than he was without the feeds going.  Tomorrow morning, he'll have an upper GI with small bowel follow through again, so we can see where the feeds are going and if he has any hang ups in his small bowel.  Today, he had his scopes and biopsies.  The tissue in his bowel is very swollen, but the biopsies are okay.  That is good news.  I'll take no rejection.  We just don't know where the swelling is coming from.  The other big news today came from his EBV and CMV PCRs (blood tests that check the viral load of these 2 bugs in the body).  His EBV numbers have come down a little bit which is wonderful news.  His CMV numbers doubled.  That is not good news.  We are treating with everything there is to treat with - ganciclovir and Cytogam - but the numbers ar

Happy 4th of July to everyone!  Cooper's new room upstairs had a great view of the fireworks display tonight.  We watched it snuggled in his bed together.  I am so glad he is letting me snuggle him again.  When he hurts too badly, he can't stand to be touched, so it is a good sign that I am allowed on his bed with him now.  Coop is struggling with pain, but we are working on it.  We changed part of his pain meds over to an oral (through his j tube) med that lasts longer than diladid (I think it is called rocsiset?).  It seems to be holding him better so he isn't needing a ton of diladid rescues in between his methadone doses every 4 hours now.  That is wonderful.  This morning, Kyle stopped the tiny amount of feeds we had started because Cooper has had a lot of vomiting, nausea, and increased pain since we started them.  He also has stopped having any ostomy output and everything is running out of his g tube drain again.  Part o

First of all, how on EARTH is it July already?  I am glad it is July because it means the kids will be here pretty soon, but at the same time, I cannot believe that we have been here long this long already.  We got here in APRIL and now it is JULY!  That is nuts to me!  The crazier part is, there is no end in sight.  We only know that Cooper still has a long way to go before we can come back to our Home Home.  Late last evening, Cooper got a room on 7B and we made the move up here.  It is nice to be back where things are calmer and we know everyone.  We have gotten to know a lot of the nurses in the PICU pretty well at this point as well, but up here is just more homey and laid back.  Cooper has settled in nicely and is enjoying the attention he is getting from the nurses who all think he is the cutest, even when he is grumpy!  They really do take wonderful care of Cooper AND of me, too!  The girls up here are willing to listen

Things are moving along nicely in the PICU.  If Cooper continues to do well and make progress like he is, we will hopefully be able to go upstairs sometime tomorrow!  This morning during rounds, we found out that more cultures are growing positive, including his last lung culture before he was extubated.  That is showing gram negative rods at this point.  His CRP has been on the rise.  That tells us that he has an active bacterial infection (or some other inflammatory process like rejection, as our PICU attending pointed out) that is still not being controlled.  The ID team is now working on everything because there are positive cultures from so many places at this point.  Once we have sensitivities to everything, we'll streamline the antibiotics he is getting to better fight the exact bugs.  In the mean time, Cooper is still running fevers all of the time with no break at all.  That is the other way that we know that whatever is going on

Today, at 2:15 pm, Cooper was extubated!  Our NP down here rallied with me early on to get him off the vent.  She laid out a plan during morning rounds and made sure that we were able to stick to it!  The best part was, his blood gases OFF the vent have been better than they were when he was ON the vent!  I LOVE that!  As soon as the tube was out, Cooper started talking and he has only just stopped because exhaustion finally won out.  I'm not going to lie...last night was about as awful a night as he has ever had.  We had to go up on all of his sedation drips (ketamine and presadex) as well as his methadone AND diladid.  By 4:30am, his diladid dose had been doubled and we had already made huge increases in his dosing.  BUT, once the tube was out of his throat, he was better able to handle the pain.  He is still getting the high doses of methadone on a schedule every 4 hours and that will actually increase in strength as we work on we

After 10 days, my sweet boy is awake again.  Well, technically he is sleeping at this very second, but he has been awake and moving around and giving orders with forceful head nods and pointing since around 5 this evening.  The transplant team was able to close him all the way, which is wonderful.  Kyle is back on and he wasn't sure they'd be able to close him completely when he looked at him this morning, but he was able to do it pretty easily!  That meant we got to stop the paralytic and let him wake up.  He is not happy because he has the vent in still, but his settings are still pretty up there, so we have some weaning down to do before we can even think about attempting a CPAP trial to see if he is ready to be extubated.  Hopefully in the next 48 hours or so, we'll get the vent weaned and get him back onto his regular nasal canula

At least we hope so!  Tomorrow Cooper is going to the OR again to hopefully be closed up.  Dr.

I am really slackin' on the daily updates these days.  I think I am starting to bore myself with the same story, different day stuff.  Yesterday ended up being a lot more eventful than we had planned.  He was doing okay early on in the day and it seemed like we were going to sail through.  I left to get some lunch and take a shower and when I came back in an hour later, I walked into a wall of smell.  I started to investigate the source of the stinkiness and it got really bad near Cooper.  So then I started sniffing him up and down to figure out where the smell was originating.  It was awful around his belly.  The doctors had changed his dressing early in the day and things were good under there...no funky odor and the drainage on the bandages was a light yellow color...as it should be.  The nurse came in to check with me and noticed the funk as well.  We decided to just take a look at the dressing to make sure things were okay.&nbsp