This video is from a few weeks ago, when Uncle Al was up visiting for Will’s 2.0 birthday:
I love how Will blows out air when he gets to the “huffing and puffing” part. :-)
On a more serious note, we are heading back to Cardinal Glennon tomorrow for yet another followup with Dr. Aki Puryear, the amazing pediatric orthopaedic surgeon who did the surgery on Will 0.2 – almost two years ago. (Start here and keep reading if you really want to revisit the experience. It’s hard for me to read some of those entries.)
They’re going to take another x-ray of Will’s left hip socket to see how the bone is developing and calcifying. Here’s what the x-ray looked like in April:
You’re looking at his hip sockets and the top (ball) of each leg from above, so the ball and socket on the right is actually Will’s left leg/hip, where he had the infection and surgery.
As Will grows, his bones slowly harden from cartilage (nearly invisible on x-rays) into bone (the white stuff you see on x-rays). If you compare the two sockets in the shot above, you can see some raggedness or serration in the bone in Will’s left leg (on the right in the image) that isn’t present on the other leg, right at the top edge where the bone is calcifying.
The fear is that the septic hip Willpower had when he was two months old may have damaged the bone’s development, and so that’s why we have to keep going back every six months for x-rays. Outwardly, he seems to have suffered no effects from the hip surgery – he runs and jumps and walks and kicks like a normal two-year-old – but in the back of our minds is always this concern that there may be something damaged or weakened that we just can’t see yet.
Of course, we try to put the worry out of our minds until our regularly scheduled visits occur, and then the anxiety starts. Hopefully tomorrow goes well, and Dr. Puryear tells us there’s nothing to worry about any more. We’ll post an update tomorrow night after we get done.
Will’s face, after clearing up for a few days, is now as bad as it has ever been.
As you can see, he’s got red, inflamed patches all over his face and forehead. What you can’t see are the patches under and above both ears, and on the back of one leg. Some of the patches get yellow, scabby and crusty, leading me to believe they’re still infected even after two weeks of both oral and topical antibiotics.
Our latest theory is a food allergy (Yes, Dad!). We’re going to eliminate things one at a time to see if that helps. This seems to have started around the time that Will starting eating oatmeal cereal, so we’re going to eliminate that starting today.
Allergic to cats?
Allergic to formula? Then why did this only start six weeks ago, when he’s been on the same formula since birth?
Is this hereditary and related to my skin conditions?
Are we overwashing and overtreating it?
We’re trying to get an appointment with a new dermatologist, and we’re also calling in the big guns – the allergy/immunologists from Cardinal Glennon Children’s Hospital in St. Louis who treated Will for his e.coli infection through the winter.
At this point, though, everything we’re trying seems to be making it worse, and this is really making me feel like a shitty parent.
The staph infection on Will’s face is already looking better. He started the antibiotic last night, but I think it may be that we’re washing his face with just a wet washcloth every 15 minutes.
The home inspector used by the people buying our house is a complete idiot. More on that later, including maybe an entire website (and google infamy!) dedicated to this clown once we’ve closed.
Pam had a flat tire last week. It cost her $15 to fix it. I had a flat tire this morning. It cost me $500 for four new tires.
Cardinal Glennon has been wonderful to work with for all of Willpower’s medical problems. I don’t know what we would have done without them. But their billing is an absolute nightmare. They’ve billed me from at least four different entities (SSM; Cardinal Glennon Physicial Billing; SLU Care; SLU Dept. of Anesthesiology). And SSM, which is the main hospital billing service, for some reason uses a different account number for every day of service, so we have about 14 different account numbers just for SSM. Of course, I pay all my bills online, so I was sending them payments, but all for the one account number I had used when I created them as a payee. The results was that I had way overpaid on one account while ignoring the others. So they kept sending me refund checks. And new bills showing that I still owed them money. I was pretty aggravated when I finally called them got it all straightened out, almost six months after Will’s surgery. And then, yesterday, they send one more bill. For $1.75. Aaarrrgggh!
Will’s new pediatrican – Dr. Malcom Hill – called today to update us on the lab results from all the tests Will 0.4 has had done over the past few weeks. First, his digestive tract infection is completely cleared up.
Second, the tests of his immune system after his four-month immunizations are all normal, which means that all indications are that Willpower’s immune system is completely healthy and developing normally. Dr. Hill suggested that these results mean that the original E.Coli infection from November was probably just a fluke occurrance, and that we’ll never really have a good idea of what caused it. But we don’t care – because his immune system appears to be fine, and that was really our last major concern in the aftermath of all these infections. It’s such a huge relief to know.
The pediatrician got the test results back from the stool samples we’ve been collecting from Will over the past few days, and he’s got yet another infection, this one in his digestive tract that’s been giving him the diarrhea. They’ve identified the bacteria as Clostridium difficile, and it’s fairly common. Thye’ve prescribed an oral antibiotic (Metronidazole, also prescribed for me for the past few years as an ointment for rosacea) which we’ll have to give him for a week or ten days. In addition, Will had some blood drawn this morning for previously scheduled tests with our immunologists at Cardinal Glennon, so hopefully we’ll get some insight in whether his immune system is developing, and how well.
We have a follow-up visit with Dr. Hill, our new pediatrician, next Thursday before we head to Phoenix. Grandma Lois drove up this morning to help us out by watching Will today and tomorrow, so he won’t have to go back to school until Monday. Will seems to be slowly improving, so hopefully he’ll be fine by then.
Today we journeyed to St. Louis and back for separate follow-up appointments with Will’s pediatric orthopedist and immunologists.
First we saw Dr. Aki Puryear, the lead pediatric orthopedist who performed Will’s hip surgery in November. After looking at x-rays taken today, Dr. Puryear was very pleased – everything with the hip looks great. They want to keep an eye on him as he grows, and as his cartilage turns to bone as he ages. Dr. Puryear wants to see Will again in three months for another checkup.
Then we saw Dr. Bradly Becker, Will’s immunologist. The concern with his immune system stems from the mystery of how Will’s hip became infected. None of the doctors know what happened, but they do know that this type of infection almost never occurs in babies as young as Willpower. Dr. Becker’s concern is that Will may have an immune system deficiency that facilitated his becoming infected, so they’re testing his blood after every round of his normally scheduled immunizations to see if his immune system is reacting properly. So far they’ve only run one test – after his two-month immunizations in mid-December – and he’s still too young for them to know conclusively whether his immune system is normal or deficient. Another round of blood tests are scheduled for two weeks after his four-month immunizations (and so on) and if Dr. Becker sees anything untoward, further testing or treatments may be needed. A baby’s immune system is more developed by six months of age, and they should know more as they keep testing him until then. At this point, all we can do is stay vigilant and have his pediatricians treat every infection aggressively with antibiotics just in case there is a deficiency.
Really, that’s just a long-winded and worrisome way of saying that Will 0.3 is doing very well, but that we still need to keep an eye on him, if only because the infection that he had was so rare for a baby so young, and because his not-yet-developed immune system didn’t appear to react to that infection.
His PICC line will remain until January 10, which is six weeks after he was discharged from Cardinal Glennon. I had thought, for some reason, that January 3 was six weeks, but high-level math has never been my strong suit. On the tenth, barring any complications, we can stop his antibiotics and the home health care nurses can remove the PICC. We are very much looking forward to that day.
(By the way – the doctors really liked his shirt.)