Travel to the Shrine

By way of review, when Brody had the thumb pollicization in January on his very stubborn right hand, Hutch (surgeon) also re-inserted the rod to make his hand straight, ie, 180 degrees (the rod is drilled/inserted through the ulna from the wrist to the elbow).

Brody's right hand, in particular, is very very tight, and stubborn, and would prefer nothing else than for us to let it grow at a 90 degree angle toward his other hand (which is what all hands do when there is no radius bone in the arm to make them straight).

We say no. We say it must be straight. Or straightish. Three inch longer reach.

So, rod back in when the thumb is moved into place. Hand then 180 degrees. Or, like, 160.

In April, that pin is appearing as a bump near Brody's elbow. During the hospitalization, we check and it's still in the bone, meaning, it's still doing some good. Hutch says leave it as long as possible.

June. Hand starting to win the battle to go back to 90 degrees. Pin a bigger bulge. I email the person at Shriner's hospital - who (whom?) I actually really like - and she doesn't respond.

This week. Brody is now complaining about the pin. Or, rather, his elbow. He keeps whacking it, or rather, the pin. It hurts, and he cries and I don't blame him. Hand back at 90 degrees, pin a bigger bump, but not breaking the skin. (It did this once, last summer. Thank GOD we were in the hospital and Brody was high at the time because Hutch just put on a pair of gloves and extracted it).

I realize I never heard back from Hutch's scheduler.

Email again this morning. She responds. That we can come to the clinic July 22.

Less than 2 weeks away.

Which is great but also, not great. Because I now have the unenviable task of calling the travel arranger for the local Shrine, and requesting two airline tickets to Salt Lake with less than two weeks notice. I explained the situation and asked if it was possible. He said, "It's possible, of course, but it means we have to pay a lot more money for the tickets." I apologized.

I don't even blame him for the snark. I agree with him. This is rude and unnecessary. But it's for Brody, so we're doing it. Although yes, it's our fault for not following up sooner. God, what emotion would I have if I didn't have guilt?

And I called our local ortho surgeon. She can't see us before then. It's like an 8 week wait to see her.

Thus, I imagined the local Shrine was glaring at me not unlike Brody performing his mad face:

Brody also has a happy face, sad face, scared face, surprised face, and silly face. I'm trying to get them all on video because he goes from one to the next seamlessly on command.

Therefore, July 16 - pre surgery consult with the urologist to schedule a surgery for the hypospadias; and

July 22 (hopefully) Brody and I fly to Salt Lake to have the damn pin removed before it breaks skin and we have a co$tly trip to an ER; and get a further surgical plan on how to re-re-straighten the right hand.

Thumb pictorial

I have so much to say and am too tired to say it.

So here are some photos to tell the story for a bit while I recover. Brody is well, but tired. His thumb, his THUMB, is pink. Glorious, circulation-full, pink. We are happy.

Brody in the play area behind the hospital on Wednesday:

Thursday, after surgery. He wanted a yellow thumb and cast, but we settled on purple. Luckily, the thumb stayed pink.

Surgery was 10:30 - 2:30. I think he got back to the room around 3:30, and he did this until the next morning:

The next morning, Friday, around 18 hours after surgery:

Saturday. Brody asked me to take this because he loved this dinosaur in the hospital lobby. He also informed me, "Mommy, I wanna say cheese." He couldn't say it though, because he was apparently looking adoringly at his new friend.

Saturday afternoon we flew back to Denver. Sunday morning, we went to the park to play. And for the first time ever, he navigated the stairs himself and went down the slide. So many times that I had to stop him because it was getting windy and cold, and he needed to go down for a nap.

A new thumb

J and B flew to Salt Lake Shriners today for a clinic appointment.

J emailed me the following pics.

This is Brody and the Mike and Sully in the hospital.

This is Brody and Mike.

This is Brody's new thumb.

Doesn't it look really thumby? I love it. Plus it's like B is doing a hand model pose.

Brody still can't move it, and the surgeon said that was not unusual, it's probably still painful to even try. J also noted that the fingers are still very curved, but as I told him, they were to begin with, and the surgery wasn't supposed to fix the curving, so that's not surprising.

Now we have to decide when to do the left hand thumb: our choices are apparently late March or late April. I'm completely unfamiliar with having a choice of surgery dates and we are actually completely undecided. I guess we'll decide in the next week or so.

Viva la thumb!

No thumb, no surgery

Just so we're clear, here's what happened over the last week. . .

Brody spiked a fever starting Wednesday evening - AFTER we flew to SLC, and after we checked into the hospital. It responded to Tylenol, and his chest was clear, but surgery was still cancelled. The anesthesiologist would not perform the surgery because of the risk of breathing problems after the extubation.

We had an incredibly rough night Wed night. They collected urine around midnight to do a UA - they thought it might be a urinary tract infection causing the fever. Which is, by the way, another worry - because if it was, that means (a) the health of his sole kidney is at risk and (b) obviously he didn't grow out of the reflux issue by age 2. Thankfully, the UA came back negative.
We did manage to convince the doc to at least take the rod out of his ulna, since it was almost poking through his skin and causing pain. After waiting 11 hours with no food and 5 with no liquids, the rod just poked thorugh on its own, and Brody started bleeding. The nurse put a bandage on it, and Brody got some Versed (relaxing medication) It took effect, and he was basically high as a kite. About 40 mins later, Hutch (the hand surgeon) came from the OR, took out what looked like a sterile pair of plyers, and while I held Brody's arm, and Jeremy held a bandage underneath for the blood, Hutch slid the pin out. Brody didn't mind too much, being high and all. Still, his nurse was amazed and kept saying that he must have a very high pain threshold.

Why can't we have surgery later this month? Although Shriners has several orthopedic surgeons on staff full time, our doctor, Hutch, is a hand surgeon specializing is micro-surgery. Shriners doesn't have him on staff. In fact, Hutch isn't paid by Shriners at all - he donates one day a month to surgery there. You may have noticed that all of the surgeries are scheduled for the end of the month - Hutch donates the 4th Thursday of every month. Which makes it all the more critical for Brody to be healthy when we do have surgery.

I happened to see Hutch's scheduler in the cafeteria Friday morning. She said that the 4th Thursday in September, Hutch is on vacation. The 4th Thursday in October, he is already overbooked. The 4th Thursday in November - Thanksgiving. And the 4th Thursday in December? Christmas.

To say we are devastated is an understatement. I've cried a lot, and Jeremy and I are just so angry - but at what? There's no one to blame so we feel completely powerless and useless. We undertook this course of aggressive surgeries so that Brody would have thumbs by age 2. Hutch told us it was critical for Brody's development to have thumbs by age 2. Well, he turned 2 September 1 and he has no thumbs. Originally, he was supposed to have thumbs in June. That was pushed back and pushed back because of an ear infection, a cold, etc. Of course, Brody has not been ill at all since April - what are the chances he gets a fever after he's already at the hospital for surgery after being healthy for 4 months???

We spent another crap night in the hospital, then Frontier wanted $226 PER TICKET to change our flight to a day earlier. Our travel person at the Shrine in Denver talked to them, and they ended up charging only $65 for me to fly back.

So basically, no thumbs for the foreseeable future. What was especially frustrating to Jeremy and me was it seemed like there was a complete lack of organization on the hospital's part. If I hadn't accidentally run into the scheduler, I would not have seen her or know this information. No one acknowledged what a blow this was to Brody's development. No one admitted that all the fixators on his right hand, all the pain and stretching done to that side, is basically worthless, because that right hand of his has returned completely to coming off his wrist at 90 degrees. And then, out of the blue, some hand therapist came into his room and fashioned a splint out of plastic and velcro - to stretch his hand. If an external fixator with 4 steel pins for 3 months can't stretch that hand, cheap plastic ain't gonna do it either. Sure enough - it slid off Brody's wrist within the hour. Worthless. Of course, that hand therapist said we'd have to go to a hand therapist in Denver to continue "distracting" the wrist by re-melting the plastic splint, and she said she'd give us her card so the Denver therapist could contact her. Which she never did. Which doesn't matter because we're not depriving our son of the use of his right hand for 5 months.

My biggest frustration is that I feel like the ball has been dropped. I know Shriners is a fantastic organization, and I know it's not their fault Brody got a fever, but the whole bedside manner and organizing our treatment plan was lacking this time. We still don't have a surgery date, not even tentative.

I don't know what our next step is, but I am looking into designing a splint for Brody that will allow him to use his hand, be comfortable and actually stretch tendons and muscles. Plastic doesn't cut it. Plaster and fiberglass don't work either. Between my husband and I we are going to figure it out.

Oh, and the fever? It went away. No other symptoms. Just gone.

Jeremy reminded me it could be much worse, as we saw several kids in the "halos" and wheelchairs at Shriners. Then I look at Brody, and he is as capable, determined, giggly, and ridiculous as ever. I know he will be fine in the long run, but I just so wanted this chapter to be concluded already and for him to have at least one thumb by his 2nd birthday.