The Feast of All Saints!!! How awesome is that!?!
Henry had a GREAT night and is Off supplemental oxygen and happily playing and we are READY to roll!!!!
Wednesday, October 31, 2012
The VEPTR is ON!!!
Just got the call! We are scheduled for Henry's initial VEPTR implant tomorrow, Thursday, Nov. 1!!!
The Feast of All Saints!!! How awesome is that!?!
Henry had a GREAT night and is Off supplemental oxygen and happily playing and we are READY to roll!!!!
The Feast of All Saints!!! How awesome is that!?!
Henry had a GREAT night and is Off supplemental oxygen and happily playing and we are READY to roll!!!!
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.
Sorta.
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.
Just kidding.
Sorta.
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.
Saturday, October 27, 2012
The big long "Henry at CHOP" update PART 1
Our day started VERY early....3:30am on Wed, Sept. 24...up and then out by 4am to head to O'Hare...
Henry and I caught our flight to Philly...
it was exhausting for him :-)
We arrived after an easy flight and grabbed our bag and were waiting for the shuttle at about 9:30am Eastern Standard Time when I got a phone call from CHOP admissions that went something like this...
CHOP: When will you be arriving?
ME: In about an hour.
CHOP: We will not be ready to admit you until 9pm tonight, can you go home to wait?
ME (in shock): Um, no...I'm from Chicago...and I'm now in Philly...with my severely disabled 2 year old....
CHOP: Oh. Well come here and we'll see what we can do.
(Sorry, I spent about 20 minutes trying to get that pic to stand up straight but can't...you can see the look on Henry's face though...that is what I felt.)
Anyhoo...off we blithely traipse to CHOP, certain the the #1 or 2 Children's Hospital in the US (they trade off with Boston's Children's Hospital every other year, it is a matter of great distress to the powers-that-be at CHOP I have been told) will have worked out a solution for us by the time we get there....
Nope. We were told we could wait in the cafeteria or up in the Family Resource Center...which has a table, chairs, tv and some books....for 11 hours....
But my awesome friend Trish came to my rescue from New Jersey, driving out to pick me up (after securing a sitter for her sleeping TWIN ALMOST 2 YEAR OLD GIRLS!) and bring Henry and I back to her house for a lovely afternoon and then dropped me off with....
My OTHER awesome (new) friend Lauren, who let me spend the rest of the afternoon at her parent's house where Henry had tons of fun with her 2yo son...
(OK Blogger you are really ticking me off now.)
To continue...
Lauren and her mom and little guy drove us all the way back into Philly at 8pm so Henry could get admitted to CHOP....we arrived and were taken up to the PICU floor and met an awesome nurse we had on a previous CHOP stay who got us settled into our room, did admission paperwork and medical checks for Henry, and we got ready to sleep after a long day, turning the lights off at about 10:30pm....
but then a PICU doc could not verify why were there and decided to move us to another floor...
at Midnight.
Crazy.
But it happened...at 12:15pm I had to pack up everything and be rolled with Henry to the 8th floor (the pulmonary floor)....
and then they tried to come in AND RE-DO THE WHOLE ADMISSION EXAM on an exhausted Henry.
I told them to go pound sand.
The next morning an apologetic resident (who had probably pulled the short straw at rounds) came in and "Sorry Ma'am-ed" me for a bit....our awesome VEPTR doc, Dr. Campbell and his assistant did also later in the morning....
We had a few more small hiccups but then went to get Henry's Pulmonary Function Test done...
Here is what getting a PFT looks like...
Henry was sedated (giving him an oral dose of what I can best describe as a really strong kind of benadryl)...but it was no picnic...they artificially inflate and deflate his lungs...and do it very fast...so his little body kind of "slams" into the bed...it was frankly kinda freaky...
He was really tired after...which was GREAT...because we got in his CAT scan with no additional sedation...he looked at me as they strapped him on the table to go into the humming huge "doughnut" which is the CAT scanner and then closed his eyes back up and went right to sleep and stayed that way through the 5 minute scan!
We headed back to the room and everyone noticed he was coughing a lot...he was de-saturating and having trouble keeping his oxygen levels over 90% (the baseline for room air) so we put on the little nasal canula for some oxygen....he was able to eat a bit and then went back to sleep...I knew I needed to sleep too as I had been told we had a busy day Friday with Henry's MRI that needed to be done under general anesthesia...but it was strange that anesthesia had not been up to clear him yet....nonetheless I was told Henry was NPO (nothing to eat) after 2am to prep for this next procedure which HAS TO BE DONE prior to the VEPTR implant (scheduled for this coming Tuesday, Oct. 30)....
so I went to bed tired but thinking it was a better day and now things would roll right along...
WRONG!!
(Part 2 coming tomorrow!)
Henry and I caught our flight to Philly...
it was exhausting for him :-)
We arrived after an easy flight and grabbed our bag and were waiting for the shuttle at about 9:30am Eastern Standard Time when I got a phone call from CHOP admissions that went something like this...
CHOP: When will you be arriving?
ME: In about an hour.
CHOP: We will not be ready to admit you until 9pm tonight, can you go home to wait?
ME (in shock): Um, no...I'm from Chicago...and I'm now in Philly...with my severely disabled 2 year old....
CHOP: Oh. Well come here and we'll see what we can do.
(Sorry, I spent about 20 minutes trying to get that pic to stand up straight but can't...you can see the look on Henry's face though...that is what I felt.)
Anyhoo...off we blithely traipse to CHOP, certain the the #1 or 2 Children's Hospital in the US (they trade off with Boston's Children's Hospital every other year, it is a matter of great distress to the powers-that-be at CHOP I have been told) will have worked out a solution for us by the time we get there....
Nope. We were told we could wait in the cafeteria or up in the Family Resource Center...which has a table, chairs, tv and some books....for 11 hours....
But my awesome friend Trish came to my rescue from New Jersey, driving out to pick me up (after securing a sitter for her sleeping TWIN ALMOST 2 YEAR OLD GIRLS!) and bring Henry and I back to her house for a lovely afternoon and then dropped me off with....
My OTHER awesome (new) friend Lauren, who let me spend the rest of the afternoon at her parent's house where Henry had tons of fun with her 2yo son...
(OK Blogger you are really ticking me off now.)
To continue...
Lauren and her mom and little guy drove us all the way back into Philly at 8pm so Henry could get admitted to CHOP....we arrived and were taken up to the PICU floor and met an awesome nurse we had on a previous CHOP stay who got us settled into our room, did admission paperwork and medical checks for Henry, and we got ready to sleep after a long day, turning the lights off at about 10:30pm....
but then a PICU doc could not verify why were there and decided to move us to another floor...
at Midnight.
Crazy.
But it happened...at 12:15pm I had to pack up everything and be rolled with Henry to the 8th floor (the pulmonary floor)....
and then they tried to come in AND RE-DO THE WHOLE ADMISSION EXAM on an exhausted Henry.
I told them to go pound sand.
The next morning an apologetic resident (who had probably pulled the short straw at rounds) came in and "Sorry Ma'am-ed" me for a bit....our awesome VEPTR doc, Dr. Campbell and his assistant did also later in the morning....
We had a few more small hiccups but then went to get Henry's Pulmonary Function Test done...
Here is what getting a PFT looks like...
Henry was sedated (giving him an oral dose of what I can best describe as a really strong kind of benadryl)...but it was no picnic...they artificially inflate and deflate his lungs...and do it very fast...so his little body kind of "slams" into the bed...it was frankly kinda freaky...
He was really tired after...which was GREAT...because we got in his CAT scan with no additional sedation...he looked at me as they strapped him on the table to go into the humming huge "doughnut" which is the CAT scanner and then closed his eyes back up and went right to sleep and stayed that way through the 5 minute scan!
We headed back to the room and everyone noticed he was coughing a lot...he was de-saturating and having trouble keeping his oxygen levels over 90% (the baseline for room air) so we put on the little nasal canula for some oxygen....he was able to eat a bit and then went back to sleep...I knew I needed to sleep too as I had been told we had a busy day Friday with Henry's MRI that needed to be done under general anesthesia...but it was strange that anesthesia had not been up to clear him yet....nonetheless I was told Henry was NPO (nothing to eat) after 2am to prep for this next procedure which HAS TO BE DONE prior to the VEPTR implant (scheduled for this coming Tuesday, Oct. 30)....
so I went to bed tired but thinking it was a better day and now things would roll right along...
WRONG!!
(Part 2 coming tomorrow!)
Wednesday, October 24, 2012
And awaaaaaaayyyyy we go!!
To Philly...
To CHOP...
To VEPTR surgery Oct 30....
Henry is ready to fly!
See you on the East Coast!
To CHOP...
To VEPTR surgery Oct 30....
Henry is ready to fly!
See you on the East Coast!
Tuesday, October 9, 2012
Getting ready....
We have our new surgery date at Children's Hospital of Philadelphia (CHOP)...
October 30!!
Go to www.veptr.com if you want to see what Henry is going to be doing while you are trick-or-treating :-)
We are getting ready in lots of ways...
like having a sleep study to compare his breathing now to how it was 6 months (and several pounds and inches) ago...
Could YOU get a good nights sleep like this?!?!?!
to
Lots to do!!! Time get started on my day....Have a good one everyone!
October 30!!
Go to www.veptr.com if you want to see what Henry is going to be doing while you are trick-or-treating :-)
We are getting ready in lots of ways...
like having a sleep study to compare his breathing now to how it was 6 months (and several pounds and inches) ago...
Could YOU get a good nights sleep like this?!?!?!
toLots to do!!! Time get started on my day....Have a good one everyone!
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