Really!?! with Elle

Last night Rowan woke up a little too much under all of his sedation and got very upset.  They had trouble trying to wean his vent because in the ICU you want kiddos like Rowan too asleep to be upset but awake enough to breath on your own – a fine balance.  So they figured it out this morning.  All of his numbers continued to improve and they were able to extubate him.  His kidneys and pancreas did sustain some damage due to the massive hyponatremia Rowan had when he was admitted.  However, the levels of some of the things they check for function in those organs are slowly moving towards normal, so we are hoping that they are not permanently damaged and will heal.
So even though Rowan got extremely dehydrated and his sodium level dropped to the floor, it looks like we may make it past this road bump and get him ready for his cath (hopefully next week).  AND we were feeling somewhat optimistic about his cath – thinking that even if the numbers weren’t ideal, we may be able to give him another month to try to “outgrow” high pressures.
We were kind of happy…
and then the Pulmonology office from Tulsa called.
Which leads me to a segment I like to call
REALLY!?!?! with Elle
Really!?!? A week later we find out that Rowan was positive for a bacteria in his lungs that could have contributed to dehydration? Really!? I mean if the hospital can grow cultures within 48 hours why the heck did it take 7 days? Kind of important, I mean REALLY!?
Also…
They tested Rowan to make sure that his pancreas is still sufficient (working enough to keep him from suffering from many parts of cystic fibrosis that we thought Rowan’s genetics protected him from).  Should be. His genetics say so.
BUT he isn’t.
REALLY!?!?!
As if a minimum of 6 major surgeries and several catheterizations wasn’t enough?
As if twice a day lung clearance wasn’t enough?
As if heart meds weren’t enough?
Rowan needs another medical complication like Tulsa needs another pot hole!
This kid can’t catch a freaking break.  It sucks.
The silver lining here is that pancreatic insufficiency is the CF aspect that they can treat.  He will now have to take synthetic enzymes everytime he eats.  He will have supplemental vitamins he needs to take everyday.  He will go to the doctor more.
It just sucks.
So after that news…we found out that our friend Oakes was in the CICU and having problems too. Another little boy, Jackson, was put back in the hospital.
BUT, Lior got good news..
So boys. Stop trying to hang out with the pretty nurses at St. Louis Childrens. They love you, but come on! They want you home and happy too.  Turn it around, I mean, really.