Last Monday, my mom (Chance had strep!), the two littles and I made the trip down to St. Louis Children’s Hospital to meet with the infectious disease staff. I thought this appointment would last no longer than an hour, so you can imagine my shock (and exhaustion) when we finally pulled out of the hospital FIVE HOURS LATER.
The doctors wanted to create a very thorough picture of E, so we were sent for blood draws and x-rays that day. They also grabbed a dietician (who had outdated beliefs about food and calcium, but whatever) and they all checked him over from head to toe. This was the team of doctors who ordered the bowel samples (you remember those…) as well.
On Tuesday of this week, this group called again and had lined up a hard-to-get appointment with an orthopedic surgeon, so “Could we get back to St. Louis by Thursday?”
We dropped everything and made a quick trip down yesterday. Since we were already going to be there, our doctors added a few more tests so we could make a day of it! (I am learning that these people have a very different view of a “good time” than I do!)
Here’s a report from our day:
We first met with the orthopedic surgeon. E was taken for x-rays of his back, pelvis, and legs. Until this point, we’ve merely guessed at his bone structure, so I was giddy to see the films detailing what’s actually going on inside.
The x-ray of his pelvis shows that he had surgery in [EEC] to put his left hip into its socket (we had sketchy records about this). This surgery, however, wasn’t done quite right, and it killed some growth part that makes the left leg keep up with the right one. His left leg will always grow significantly slower than his right one. (More on this in a minute.)
The hip, however, seems to be placed pretty well. The surgeon does not believe any more surgery needs to be done at this time (hurray!). There is nothing stopping his mobility, except for tight muscles and tendons. We’ll be working with a physical therapist to help loosen him up.
The bad news though, is that this hip is not going to last him forever. The doctor believes that in 9-10 years, he will probably need it replaced. At that time, he will probably need to have his left leg lengthened as well. The doctor did state that E’s leg isn’t so horrible that he would even consider amputation, so that was good to hear!
It’s difficult to know exactly, but from the medical records we do have, and from all of E’s old shoes with a lift on the bottom, it seems that his left leg has gone from being 4 centimeters shorter (right before we adopted him) to only 1 centimeter shorter (.5 inches) today! This information defies the odds, and we are attributing it to God! Because of this growth, the shoes with a one-inch lift (most recent pair from the orphanage) are much too high, which explains why he’s been refusing to wear them! His .5 inch need no longer requires special shoes or soles, just a small insert inside regular shoes! We’ll be going shoe shopping soon!
E was also fitted for a leg brace today that will extend from under his left knee to his heel.
We were able to see x-rays of E’s spine today as well. The beautiful thing about St. Louis Children’s Hospital is that the doctors all work so well together. I had a couple questions when looking at his back, so the orthopedic surgeon went and grabbed the spine specialist’s nurse practitioner while we were there.
From the films, we were able to see that E has two extra half vertebrae in his back. It’s like if someone were building a block tower using square blocks, but partway up they threw in a triangle block. The tower no longer extends straight up, but turns slightly.
E has two triangle pieces in his block tower!
Because the spine is woven with nerves and parts of the brain stem, we’ve now been given a date for two sedated MRIs. The doctors want to determine what is fused to what and who is connected to who in his back! Back surgery is pretty much inevitable in our near future. We’ve got to get those triangle pieces out of his tower.
We were told that his back brace from [EEC] is no longer needed. So while we were waiting on doctors, we ceremoniously threw it away at the hospital. E was afraid we’d make him wear it, so Nasko threw it into the trash can for us!
Good riddance, back brace!
After the appointment with orthopedics, we had a sonogram of E’s kidneys. He was born missing some important parts of the structure that eliminates waste (I’m trying to protect his privacy here. His future prom date might read this.) Some surgery was done in [EEC] at birth, so the doctors here want to be sure everything is functioning properly. No results yet, but the technician could not believe the amount of gas in his belly. I’ve changed the child’s diapers, so the amount of gas was of no surprise to me.
Next, we ate lunch at Applebee’s. :) No conclusive results yet there either.
Finally, at 1:00, we did an echocardiogram because multiple doctors have reported hearing a murmur (not reported in any of his [EEC] medical records though).
(The results from lunch are in – it made us all sleepy!)
The murmur (which was confirmed) became the least of our problems when the tech called in the doctor. He apparently could not locate a main artery. It is shaped like a candy cane and comes from the top of the heart down the patient’s left side. The doctor thinks E’s is on the opposite side and goes down his right side. This happens sometimes, but can be a problem as the valves (which extend like fingers off the artery) can essentially strangle the trachea and esophagus.
Thankfully, E doesn’t have symptoms of that yet (labored breathing, severe reflux), but this could be because he is so small and behind in size (thank you God for Your ultimate protection!)
So, we’ll be doing a CT scan and barium swallow study to get a better understanding on where his valves are.
In all this excitement, I forgot to ask the doctor my list of questions about the heart murmur. We’ll be back to St. Louis in early October though. We scheduled the sedated MRI for a Tuesday and then we meet with a big team of doctors in the International Adoption Clinic (they specialize in foreign kids who have lived in orphanages) on a Wednesday.
During that trip, we’ll also be able to pick up E’s new shoe insert and leg brace.
Overall we were encouraged by the results and reports from today. I’m excited to hear everyone’s perspective when we get the doctors together in October. Until then, we are following our orthopedic specialist’s advice for the best way to help him develop appropriately – and that’s to let him be a kid! Running, jumping, chasing and moving are all on his to-do list everyday! Thankfully he cooperates with those instructions better than he ever did with wearing his back brace!