We spent a couple days at Saint Louis Children’s Hospital this week. I thought I’d report what we know (and don’t know) at this point.
On Tuesday, we had a sedated MRI scheduled. We were hoping to get a better picture of what’s going on with E’s spine and pelvis. Once E was asleep, we knew that there’d be lots of sitting and waiting – something that Nasko and Louis aren’t so good at doing!
So, we divided our efforts and Chance dropped E and I off at the hospital while he took Nasko and Louis to the hotel room we had booked for the night.
E and I used FaceTime on my phone to tell everyone “night-night” before E’s sedation.
E, naturally, did not love having the IV placed in his arm, but he did love all the attention he received from the nurses. In fact, a couple nurses came in, “just because they’d heard how cute this patient was.” So other than the needles, most things from our morning made E smile.
He even enjoyed being wheeled down the hallway on his hospital bed.
The MRI went well. The nurses said it might be a little long if his spine was especially curved (we’ve got that) and if there were any complications keeping his airways opened (we’ve got that too because of his huge tonsils!). They ended up using a clip to keep his tongue from covering his throat, but otherwise everything was fine.
When E was coming off of the sedation, I’d describe him as “floppy”. He could not sit up at all. The nurse kept telling me to set him upright, and he’d scrunch back over instantly.
He was also full of attitude.
(Ok, this is actually true even when he hasn’t been sedated.)
The nurse really wanted him to eat and drink before she released him, but he absolutely refused. The sedation ended at 2:00 PM, and he hadn’t eaten since 8:00 the night before, but that did not seem to matter. No food and no drink were entering his mouth. Period.
The nurse finally discharged him because she could “tell by his attitude that he felt just fine.” From there, we hurried off to Orthopedics and Prosthetics.
I put floppy E and all our things into one of the hospital’s wagons.
Within two minutes of our journey across the hospital skywalk, E was eating some pretzels from a biohazard bag.
Of course he was.
While in the orthopedics office, E received his new leg brace! He is to wear it all the time on his left leg to keep his heel on the ground (rather than allowing him to continue walking on his toe). He also received a .5 inch lift that goes into the heel of his shoe. This helps to make his legs function at a more even level.
Following this appointment (and paying for the most expensive plastic ankle bracelet EVER), E and I took a taxi to meet up with Chance and the boys. My mother-in-law joined us after she got off of work, as we asked her to come spend the next day with Nasko.
That night, we swam in the hotel pool, ate dinner at Drury Inn’s supper buffet (Hot dogs, macaroni and cheese, and chicken nuggets – my boys were in heaven.), and went to the Galleria in order to hold the new Apple iPhones and find shoes that E could wear with his brace.
E is in love with his new shoes and brace. He thinks he HAS to wear the brace in order to wear the new shoes. Some information is best kept to myself…
The next morning, Nasko and Grandma Missy stayed near the hotel (feeding the fish at Union Station was a highlight) while Chance and I took the littles back to the Children’s Hospital. We had an all-morning appointment with the International Adoption Clinic. During this appointment we met with Infectious Disease, Psychology, and Occupational Therapy. We were also supposed to have an audiology exam (hearing test), but opted not to since E’s hearing should change after he receives tubes.
Since we’d already seen Infectious Disease, we spent that hour getting caught up on test results and checking in on progress made. The most irritating news was that we have to re-do our stool samples because the local lab did not send them on to Mayo Clinic for further testing.
The most informative thing was that we have actually received a diagnosis for E and all his issues (more on that in a different post). Since getting his diagnosis, I’ve spent quite a bit of time reading and learning!
E, of course, shone like a star through the morning-long appointment. He wowed the OT with his block-stacking abilities (12 without assistance!) and he imitated the drawing of a flower when all she wanted was to see if he could draw a straight line. His cognitive and fine motor abilities are just fine!
Because the Infectious Disease doctors believe in torturing children and their parents, we ended the day with a blood draw to check E’s levels.
Chance picked up Nasko, some Five Guys, and gathered E and I before we all headed home. Both littles took great naps in the car, and the entire family was in bed by 8:30 that night.