St. Louis Children's Hospital is really an amazing place. From the time you walk in the doors you are greeted with smiles. The security guard asks if he can help you find your way. Everyone is patient and they all seem to really care about the children and their families. Everywhere you look there are things to help take your mind off of the reason for your visit. On the outside of the building, there is a giant metal down spout shaped like an elephant's head whose trunk whisks the rain water away. The awning is a blue butterfly. Inside there are fish tanks, a magical ball machine, and colorful paintings on the walls, all done with the utmost attention to detail. A child's voice announces each floor in the elevators. Alexander's favorite place is the 2nd floor hallway where large model train tracks are hoisted around the perimeter of the ceiling encased in plexi glass. He's spent quite a bit of time there already chasing the 3 sets of trains that chug above his head.
On our first visit to Children's we saw 3 doctors and one therapist. Our time was spent in colorful office spaces and waiting rooms. The HD biopsy, however was a little different. For this visit Sophie was admitted and was fitted with a wrist band. We all needed name badges (Sophie's Mom, Sophie's Dad, Sophie's Brother). I expected to be taken into an office like the others we had been in. As Nurse Charlie escorted us, my heart stopped as a very, very premature baby was wheeled by in an incubator. My breath actually caught in my throat and I found myself choking up. I hadn't expected to see anything like that. I think I actually stopped walking for a second. Charlie gently touched my shoulder and whispered, "There but for the grace of God. Ok Mom, take a big breath in...now let it out. You've been there before haven't you?" Now Sophie wasn't that small when she was born, but she was in an incubator, naked, hooked up to tubes and beeping machines that look like fish finders.
To get to our room we passed by a busy nurses station (just like in our NICU) and saw lots of other children in beds with tubes and parents with worried looks and beeping fish finders (just like our NICU). I was surprised to feel so off kilter. It was a relief to get into our room and shut the door.
Nurse Charlie was lovely. She took her time explaining the procedure. She asked if we had any questions and let Sophie and I examine the instrument that they would be using to do the HD biopsy.
It looks complicated and scary, but only the silver part is inserted. The syringe-like part gets pulled back to create the suction and the trigger is pulled snipping off a small piece of tissue that has been sucked into the side of the silver part (hence the name, rectal suction biopsy).
Sophie's doctor was Australian and had a lovely accent and bedside manner. He took 3 samples and was done in a matter of moments. As the tissue is taken from an area that doesn't have pain receptors, Sophie barley fussed at all. We'll get the results in 7-10 days.
Sophie's doctor was Australian and had a lovely accent and bedside manner. He took 3 samples and was done in a matter of moments. As the tissue is taken from an area that doesn't have pain receptors, Sophie barley fussed at all. We'll get the results in 7-10 days.
That night for dinner we visited Blueberry Hill in the Loop. M was in heaven as they had his favorite childhood pinball game "the Twilight Zone" AND Fat Tire on tap.
Alexander made lollipops out of cheddar cheese balls and then started eating the rest of his dinner with a toothpick.
On the way back to the car we popped into Vintage Vinyl Records and stepped back in time. M and I met in college while working for an independent record store. We both thought these stores had gone the way of the dinosaur and were so happy to find this place. As we perused the CDs encased in plastic shucks (those darn things broke many a fingernail back in the day) and records (as in actual vinyl - the only real way to listen to music) we were near giddy. The clerks with scenester clothes and bored expressions made me smile. There was even a live "performance" of local rap artist Ruka Puff promoting a mixed tape of St. Louis rappers. It was quite loud and the kids looked confused as to why we would be there. We figured a few minutes wouldn't do any real hearing damage. The best part was when M discovered a cash of Blowfly CDs. It wasn't just that they had at least 10 copies that cracked us up, but that they were filed next to Kids Corner CDs. {For those who are unaware, Blowfly's bio reads, "Before there was Kool Keith, Old Dirty Bastard or 2 Live Crew - before there was hip hop, for that matter - there was Blowfly, performing X-rated songs with a funky groove." I can't even list titles of his songs here. Goggle him, you'll see.} Only an independent store like this and the one we worked at stock this type of... art?
Alexander got a special treat as we came upon an old trolley car nearby which promptly became his favorite. M has decided that it would be amazing to get a job at Wash U just so he could shop at Vintage and stop by Blueberry Hill for the beer and games.
Then today was Sophie's pre-op appointment with opthomology.
Marlo retested her eyes and its true, her left eye is turning in a bit more than during our last visit (I thought so and should have trusted my Momologist instincts). But, she got even better measurements this time and we will proceed with Strabismus surgery on her left eye and nasal lacrimal tear duct surgery on both eyes on May 19th.
All things considered, it was not a bad trip.
7 comments:
What a write up! You are too talented, my friend. Brings back many memories about The Loop and you went to Vintage Vinyl!! I never even thought to tell you it was there, but makes total sense that you'd like it.
And Charlie rocks, doesn't she?!? She's been in on three of our procedures, and she sure makes one feel at ease, doesn't she?
And don't worry, I've been perusing the univ websites there for ya already. We SHALL be together again! :o)
RK-
Thanks Dude!
You do seem to be talented at getting others employment. You're on the case!
You leave Jennifer here!!! I am watching you two. No purusing of anything young lady!!
Glad to hear that things went well. I've been worried. Call when you get home and we 3 can get together.
Hey! Glad to know things went fine with the biopsy. Donchya just love the waiting game???
larkinsmom-
We are home, but just for a few days. Then again rk is outta here very soon. Maybe we can kidnap her for a lunch break? Call me.
leah-
Thanks for reading & taking the time to comment. I don't know exactly why, but for the 1st time in my life - I'm not worried. Maybe I'm setting myself up, but I just FEEL ok about the biopsy. Its weird, especially for me.
I hope you get good results on her biopsy! Mayson will eventually have surgery on her eyes too. not something iam looking forward to!
amy flege-
Honestly, its not too bad and the results are so worth it. She's doing so well now, so much more vocal and moving around a lot more. She's become a little firecracker. I'd be happy to talk with you anytime.
HD results were negative!
Post a Comment