Tuesday, October 30, 2012

The big long "Henry at CHOP" update PART 2

Ok everyone, I have about 15 minutes to give this blog update until the evil respiratory therapists come to force air down Henry's throat while he wears a Darth Vader mask...

Just kidding.


If you have not read Part 1 of our amazing adventure that started last Wednesday, click on this: http://www.bringinghenryhome.blogspot.com/2012/10/the-big-long-henry-at-chop-update-part-1.html

I'll wait.

So when last we left you faithful readers, Henry was on a bit of oxygen Thursday night and was not allowed to eat after midnight and we were starting to wonder about the status of our MRI the next morning...

and our "wonder" turned to "generally ticked-off" when at 8am the next morning we were told there would be no MRI as the schedule for MRI's under general anesthesia was booked....with no explanation for why Henry's MRI was the one not in the computer/on the schedule...

which meant that on Friday, Saturday and Sunday I would be an inpatient with NOTHING TO DO ALL DAY BUT SIT IN A HOSPITAL ROOM WITH A 2 YEAR OLD until the MRI Monday morning.

I was a bit peeved as you might imagine. Paul and Tessa could have come with after all and we could have had 3 lovely days touring Philly.

My second tear-filled breakdown of this CHOP trip happened about noon that day and I summoned the social workers at the hospital to tell my tale of woe and try to find out why all these missteps were happening.

They were good listeners...but ended up throwing me some cafeteria vouchers and hoping the rest of our stay was better.

I tried to chill for the weekend. Clearly what was going to happen was going to happen.

Henry and I napped.

We played catch - translation: "Henry whips the ball somewhere in the hospital room and mom has to go fetch it out from under the medical equipment while Henry giggles."

We went downstairs and looked at the pumpkin carving contest winners.

We got a balloon!

We had a visitor! Fr. Mike, an Augustinian priest friend of my MIL and her good friend Mrs. B, came to bring me Communion on Sunday and to anoint Henry in preparation for the MRI and VEPTR implant.

So we tried to go to bed early Sunday night in preparation for a very early Monday morning MRI...but Henry had a late nap and was resisting sleep...so we kept the TV on and ALL THAT WAS ON EVERY SINGLE LOCAL CHANNEL was frantic reports about some hurricane or tropical depression or nor'easter or  similar weather Armageddon called "Sandy" which I barely paid attention to while trying to interest Henry in his "Where is Elmo's Blanket?" book which we had already read about 47 times in the long 3 day weekend....

We were brought down for the MRI at 6:30 am Monday morning and I got to wear those nifty blue scrubs and pretend I am a doctor until I walk Henry back into the Operating Room and hold the sedation mask over his fact until he falls asleep and I kiss him good-bye and head to the waiting room....

The dynamic MRI took almost 2 hours and I went to recovery with Henry who did well....but per his usual profile...he needed a bit longer and some oxygen help to recover after the sedation...so we were sent up to the PICU for recovery since Henry would be going there anyway after the VEPTR the next day...

Henry was still pretty groggy so I was able to sit and eat and watch TV where the weather forecasters were whipping themselves into an absolute FRENZY over Sandy, which was starting to cause heavy rains and a bit of wind here in Philly Monday afternoon (Oct. 29)....As I had a cup of coffee at Henry's bedside, I saw that the mayor of Philadelphia was ordering the subway system closed in just a few hours in case of flooding and that many of the bridges in the area would be shut down in the evening and closed indefinitely...and I started to have a flutter of worry...

which blossomed into full-on disbelief as a khaki-clad Dr. Campbell (I have NEVER seen him out of OR scrubs on any of our 4 trips in 2012 here to CHOP) announced that the hospital had made the unprecedented decision to shut down the OR at CHOP all day Tuesday to all scheduled procedure except for urgent life-saving operations...

so Henry's VEPTR implant was cancelled.

Dr. C said he was hoping to reschedule his out-of-state VEPTR patients (there are 3 of us here) for Thursday morning but we would not know for sure until Wednesday afternoon or evening.

Ladies and Gentlemen who think they have control of their lives and that their own amazing intelligence and skill and organization is responsible for the wonderful outcomes of their lives/marriages/children/careers, etc.

I have a newsflash for you.

Control is an illusion.

In this life we are at the mercy of so many things....sure, we can (and should) do the work we can to optimize the best outcome...

but we cannot guarantee anything.

So I sit here.

Waiting still.

With plenty of company.

With my Henry....who we just discovered LOVES BBQ Pop Chips!

And I wait.

And I will keep you posted.


  1. I love you!!!!! You are so normal and beloved! Hugs and prayers!

  2. Oh my goodness, I cannot even imagine. I'm so sorry for all this you are going through! Praying that Henry will get rescheduled FOR SURE and that nothing else goes wrong!

    You must have my bad luck. I thought I was the only one.

  3. I kind of said bad words on your behalf reading about all the delays and inefficiencies and aggravations and whatnot. Oh yeah, then I got to the part about Stormy Sandy.

    Do you want me to have a temper tantrum on your behalf too?

    So sorry for you for the worry, the waiting, the imprisonment in the hospital.


  4. Oh my goodness! I cannot imagine how frustrated you must be. Hospitals are exhausting and Mommas always want to be home with the rest of the kids. Hoping things get straightened out soon.

  5. Wow! Satan loves to cause you so much pain and suffering!! Henry's journey toward healing has had so many obstacles!!

    Praying for peace for you and Henry!

  6. praying that they can reschedule surgery to thursday morning.

  7. When all of this is over and Henry is recovered, I insist you road trip to Memphis and I will treat you to a fantastic dinner, a good nights sleep and plenty of margaritas!

    I love the pic of him curled around you in the bed. You are an amazing Mother, Wife, friend, well,everything. You are a light in this dark world. God bless you and Mr. Henry! I hope he gets a green light for Thursday. Will you sneak him some Peanut butter cups from me:)