Four months plus 9-12 weeks........

They tried to extubate the wee one Monday—this while the parents were pulled together for a ‘family meeting’ with the medical team (surgeons, cardiologists, occupational therapists and all their ‘fellows’ that gather ‘round them like a flock of geese). 

The removal of the tube came with a bit of drama in and of itself.  The surgeon argued with the cardiologist before the weekend that the wee fella needed a few days of ‘rest’ before they removed the tube—they’d just inserted a tube to drain fluid from his lungs and he thought the month old baby could use a weekend of recuperation.  The cardiologist argued that the process needed to begin—the sooner the better.  The surgeon won—he’s the head professor for surgery at the University.  But then the cardiologist is the professor of cardiology….talk about an “A” team…..LOL

The weekend was far from ‘stress free’ for the wee thing, but the level of issues didn’t reach ‘high risk’. 

The tube came out and the family met for over an hour with the “A team”.

At this point they see the recovery much as we do—filled with twists and turns and issues which need to be attended to right where he’s at.  He’s progressed (drainage tubes are out, pacing wires are removed and they’ve started him on feedings through a tube) but it’s been a slow progression, wrought with one issue after another.  The chest tube to  drain the fluid that’s surrounding the lungs was a result of the feedings they introduced—each step forward seems to come with a ‘cost’.

The bottom line  is the baby won’t come home between now and the second surgery which is suppose to occur at 4 months of age.  That’s three more months in Philadelphia IF complications don’t push the surgery back a month or two.  And then there’s the recovery time from the second surgery….9-12 more weeks.

At best we’re looking at January for surgery—that’s IF the surgical team doesn’t take off for Tahiti on the Holidays and IF there’s no complications (*insert sarcastic laughter*).

And then there’s the 9-12 weeks  recovery time……That pushes us into May.

MAY….

M.A.Y.

*sigh*

The tube went back in last night.  He was struggling so hard his chest was heaving….and the girl was concerned because he ‘looked terrible’.   
We knew the odds were they’d have to re-intubate, but still…….. 
The surgeon, unaware the mom was behind the curtain pumping breast milk, entered into the room and talked to the wee one—lovingly calling him an ‘ungrateful little jerk’ after all the arguing he’d done to get him the weekend of rest!  Darn that she didn’t take a photo of his face when the she popped out from behind the curtain and whole heartedly agreed.  LOL

 It’s hard.  Being here while all that’s going on there…..knowing we don’t get to have the wee one home between surgeries, that he’ll continue to live in a hospital, isolated from his family and his home.  Knowing the girl will continue to be there—separated from her daughter and partner……

I need to stay grateful that we’re THIS far, that the wee fella is continuing to fight to come out the other side of this.  And I need to give note to the fact that the mom, who’s stayed with him the entire time (except for one night at home to make special cookies for the staff at the hospital in Iowa—yes she IS her mother’s child……) has an office in K.O.P. which is right down the road from Philadelphia and that her boss has approved her working from the hospital, from the office in K.O.P., from the room at the Ronald McDonald House where she’s staying—he doesn’t care where she does her job as long as she does it.   I need to stay grateful that the grandmother, who’s retired, can stay with the dad during the school week and help with the daily ‘stuff’ while the 6 year old skips off to school……

If none of that were available, I don’t know what we’d do and where we’d be in this whole ordeal.

What young family—what OLD family could (physically, emotionally & financially) afford to stay with their child for six months while they fight for their life……a thousand miles from their home.

I don’t believe that the second opinion just ‘happened’ to be in Philadelphia any more than I believe the fact that the office she worked from multiple times a year is right up the road is a ‘coincidence’.

Nor do I believe he randomly ended up with the “A team” that he has.

And I don’t believe he was gifted to our family by ‘a fluke’.

But I do believe in prayer.   I do believe G-d hears.  And I know His hand has been in this one since before we knew what ailed our wee little fella.

And so we all continue to pray……and hope…….and wrap our heads and our hearts around what we get to do TODAY to make a difference in the lives of the people we care about and hugely love….