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!)
Oh, Man, Carla! You are amazing! Gotta love hospitals, but at least, this is making you a saint! You are in our prayers!
ReplyDeletepoor Henry
ReplyDeleteYou're exhausting me! Poor Henry. I feel so bad for him.
ReplyDeleteI used to work in a hospital; I used to be one of those people who were told to get people in the middle of the night for their tests....most of the time I was told to "beat it". :-) Believe me, I understood, and it was always humiliating to be the one to wake someone up from a dead sleep for a CAT scan! Sometimes I wonder if doctors forget that the patient is a PERSON and not just a test to be completed...
Praying for Henry this Wednesday, I really hope things go well more smoothly for the both of you.
Pout! Very hard to see you and Mr H put through the wringer BEFORE scary surgery day. I'm keeping up great hope for you guys. The theater mantra was "bad dress rehearsal, good opening night" --so maybe "bad first week admission testing--easy surgery day!"
ReplyDeleteHey, a Carmelite can dream right! :-) Mr H, I never go to McDonalds, but today I ate your favorite french fry in your honor. Praying for you buddy. Hurry and get those cool bionic man implants to impress everyone. Love you!
I'm glad you're getting closer to his surgery,
ReplyDeletemy favorite part of this blog is "I told him to go pound sand!" :)
You are making me so thankful for the sane people at UC Davis Medical Center who hosted Daniel and I for almost three weeks last year.
ReplyDeleteComing out of hiding here. ;)
ReplyDeleteI started reading your blogs when you first brought Henry home.
What a ride you have all been through but what a great job you are doing, Mama!