Cystic Fibrosis Pub Crawl

So the Cystic Fibrosis Foundation chapter in Tulsa is having a pub crawl to raise money.  It seems a bit weird to support a drinking event to raise money, but I am NOT complaining.

$40 gets you a t-shirt and then your team gets 2 pitchers of beer for every 8 people at each bar you get to downtown in the Blue Dome District.

Doc and I are going.  We have a team for Rowan.  It is called “Pancreatic Beerzymes”.  We’d love to have you join! 

You can find out more on facebook here:

https://www.facebook.com/events/453496234668002/#!/events/453496234668002/

Or here:

http://www.cff.org/Chapters/tulsa/index.cfm?ID=21993&blnShowBack=True&idContentType=1483&Event=21993

Once Upon a Time…

Rowan needed oxygen.  It was supposed to be a 30 day deal.  30 days, then a cath and either surgery or we redirect care.  Then Rowan went into shock, so they rescheduled.  Then Rowan got a virus, so they rescheduled.  Then Rowan got sick again, so they did a cath, decided to do his surgery, but wanted to wait a month.
Then Rowan had the surgery.
Then Rowan went on oxygen again.
We are beyond bummed that the oxygen tank is still Rowan’s accessorry to bear.  It’s heavy to cart around.  He hates having it blow in his nose and constantly rips it off.  We don’t sleep because of said ripping.
The current thought is that Rowan is just adjusting to his new blood flow and needs a little help.  In a few months he should level out and not need the oxygen, especially once this “virus” he currently has clears up.
So we are no where near that place in life where you feel like the worst is over and you are living the dream you worked hard for…which when we started those original 30 days I really thought post-Glenn would be like.
We are trying to remain hopeful, that one day Rowan will be oxygen free and up running around.  One day he’ll be strong enough to hold his head up for long periods or sit up or crawl on his own.  One day he’ll eat.
Until then, we are waiting on our happily ever after (where Rowan slays the evil oxygen dragon and rescues the pulmonary pressure princess and we all live in a big castle).
Once this virus thing is over, we are hoping to have lots of people over so we don’t feel so lonely and isolated.  We miss other people.

Home

So Rowan is still sick with some sort of virus.  He hasn’t had anything other than a brief low grade fever and a need for minimal oxygen, but he definitely feels horrible.  Yesterday, any waking moment he had, he screamed.  Not like “crying loudly” like high pitched OUCH OUCH OUCH screaming.  Today, we get lots of happy smiles…then some loud screaming and whining mixed with a few screams.  So I think he’s feeling better!

We had some unexpected troubles this hospital admission.  For one, NONE of the nurses were able to give him the CF enzymes he needs.  They are hard to administer, granted.  It took me about a week to figure out how to give them correctly and get them all in.  But we had a nurse tell us that one of his night nurses just gave up and didn’t give them at all during their shift.  Not okay.

He was supposed to be transferred to a 3 to 1 level of care (three patients to one nurse) but when he was transferred, his nurse had 5 patients.  Ick.

So we felt like bringing him home, despite him still having the rash, was the best route for him.  We couldn’t be at the hospital all the time to give him his CF medications, and he definitely needs them.  We felt like at this point, he’d be happier at home, he would actually get his medicines correctly and on time, and people statistically heal faster at home than in hospitals.

So the only person who slept in our house last night was Evelyn, haha.  Rowan was horribly uncomfortable and felt obligated to let us all know about it. 

Evelyn is happy he’s home.  She keeps climbing his crib to talk to him.  He’s started playing with toys and is rolling from back to side constantly while trying to get comfy.

We expect another week or so before he is totally over the virus and another 3 weeks or so before he is “recovered” from his heart surgery and can be held in positions that are still uncomfortable for him now.  Doc goes back to work the 1st, we we’re trying to enjoy this brief time we have where we are all together.

Well, Close Enough

So Rowan had a dye study done on Wednesday.  They tried to give him Barium in a bottle (which prompted a giant panic attack from Rowan and a ton of aspiration) so all of the dye went straight to his lungs. 

Good news: When they tried thicker things that were like honey or pudding, he didn’t aspirate them.  So we aren’t hopeless to get him to eat by mouth, it’s just a long road.

So – after the dye study, Rowan dropped SATs and has needed oxygen off and on.  This is almost definitely due to all of the Barium that he now needs to work out of his lungs.  This could take several days.

While it isn’t ideal to me that he comes home needing oxygen and constant monitoring, we also know that when he is home, he gets fed on time, he gets meds on time, and he gets more frequent diaper changes because he is our only patient, while his nurses have had as many as four other kids to take care of.  Plus…he’s happier.  And Evelyn can’t wait for him to come home.

So our first week at home may be a little more difficult than we’d hoped, but we want to take him home anyway.  He has a few tests this morning to see if we can.  If not today, soon.  His room is ready.  I’ve (almost) caught up on cleaning and laundry.  So hopefully home today!

Frustration

So Rowan can’t swallow correctly.  Granted, he was screaming and upset through most of the dye study he had done (from my understanding)…but basically all of the dye went straight into his lungs.

I have no idea what that means long term.

Other than lots of frustration.

Oh – and that he is now back on oxygen from inhaling lots of dye.  Great.

He Likes Me

Ok…so, I can’t even tell you how much I so don’t care about his medical stuff right now (which is all great by the way).

Today, I got to hold Rowan. No oxygen.  One IV (that was capped so not attached to anything).  I picked him up and set down.  He looked at me, smiled gigantically (like almost the horseface I make when I’m tooo happy (a la my wedding pictures)) and let out this happy SQUEAL!  That’s right!  Happy noises!!! He is making happy noises!  Coos!  Ahhs! Squeals! 

We played for a while and then I put him back in bed to help get his feed ready.  What happened?  He screamed and then REACHED FOR ME!  Both hands!!  Trying to roll over.  I got closer to him and he smiled and squealed again.  Checking to make sure it wasn’t just a fluke, I backed away and he started crying.  Which stopped as soon as I got closer again.

I don’t even know what to do.  I’m sooooo happy.  So in love.  I cannot WAIT for him to come home and play with his sister.

Drug Free Youth

Rowan is drug free today for the first time in his life.  And by that, I mean that he is addictive narcotic free.

He is free of narcotics.  No more withdrawals.  No more sweats and shakes and screams.

Today was the last day.  He is very tired.  But….

He’s Free.

Free. Free. Free.