Tuesday, October 14, 2014

Connor Hospital Updates

I forget to update this, but guess I should as I think there are some people reading this out there that may not be in the loop or on Facebook (ahem, cough, Julee).  So here's how things are going...

Connor developed a cough and very low grade fever Friday, October 3.  He didn't sound good so we decided to take him in on Sunday to get checked out since I was going to take Monday off from work.  When we were getting ready to go, he started wheezing so instead of driving to MUSC's After Hours, we went to the Children's ER.  He was diagnosed with croup, given a steroid, and we were sent on our way.  He seemed better that afternoon and we were hopeful.

 Despite looking happy in this picture, someone was siiiick...

On Monday, he still wasn't better so we decided to keep him home on Tuesday.  Tuesday afternoon, he didn't sound good, so we went to his pediatrician's office and they agreed that his breathing was not good.  Since his stats were good, they allowed me to drive him back to the ER.  They said he would likely need to be admitted, at least for observation.  Sure enough, we were checked into a room for the night.  Connor also tested positive for the rhino/entero and adeno virus.  MUSC doesn't code for the Enterovirus D68 that you've been hearing about all over the news, but chances are he has it as his symptoms, including the wheezing, matches up well.

I stayed with him because Matt just started at Boeing and had no leave.  He did okay, but was given an additional dose of steroid really early in the morning because he was again struggling to breathe.  We were discharged Wednesday and were told he'd still be noisy and to follow up with his pediatrician the next day.

Thursday morning was AWFUL.  He was really laboring to breathe and the whole way to the pediatrician's office I was wondering if I should be taking him to the ER instead.  When we got to the doctor's office Connor was in obvious distress.  We gave him some breathing treatments and waited for EMS to arrive.  His heart rate was in the 220s when they were working on him and they had to intubate him.  He was working so hard to breathe and his heart rate was so high, they were worried what would happen if he wasn't intubated.

Connor after being intubated. Kinda scary that at this point his breathing relies on that guy squeezing the bag...

We were sent via ambulance (sirens and lights included) back to MUSC.  Since he was already intubated, we were taken straight to the Pediatric Intensive Care Unit (PICU).  

From here, it's pretty much a blur.  As I write this, we are still in the PICU and the days seem to blend together.  His tube was taken out Friday.  When EMS came, the tube they used was a little large for his airway so the doctors wanted to change it out for a smaller one.  They figured if they were going to do that, then why not take the tube out and see how he does.  Connor has done well off of it.  

In fact, Saturday was such a great day that he was off the vapotherm, off oxygen, and eating.  However, with his second bottle he was struggling too much and his hands even started to turn purple :/.  He made progress, we just moved way to fast...

Today we are going to try bottle feeding again with Pedialyte and he will still get food through his feeding tube for 3 hours at a time.  We'll see how it goes. 

We also decided to do a permanent feeding tube once he's all better.  Matt and I have been getting pressure for a while from pretty much all of his doctors.  His nurse the first night said 100% of parents are glad they get it and his small size has likely exacerbated his symptoms from these viruses.  So, he will be having surgery soon to get a g-tube.  I talked to the surgeon yesterday and since he is on acid reflux meds, there are some tests we need to get done to see if he really does have reflux.  If he does, they will have to tie the top of his stomach to his esophagus and it will be a longer surgery and recovery time. 

Today has been a MUCH better day...his demeanor is improved and Matt and I got a smile yesterday so we're hopeful he's on the path to recovery.
 I'll try to update this as frequently as I update on Facebook until we're back home.  For right now, I'm chilling with Connor in the PICU and sleeping at the hospital and poor Matt is having to try to concentrate at a new job and going home by himself each night.  We are looking forward to having our family all together again soon.

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