Tuesday, September 2, 2008

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.


SaRaH said...

want me to go get some thumbs? I suppose GWB's would seem oddly large, but I could whittle them down...

pattinase (abbott) said...

I am so sorry that the American medical profession continues torment you. I wish I could think of someone or something to do.

My Carousel of Progress said...

We are so sorry to hear about your experience. Makes us really consider our options a little more thoroughly for Elias. Maybe they can send Brody to another Shriner's hospital? I'm not savvy to all the logistics yet, but certainly they would be willing to consider that option, especially with the push for developmental reasons. Best of Luck with this, we will keep you all in our thoughts and prayers.

Robyn said...

I'm so sorry. You must be so disappointed and heartbroken. I can't even imagine.