OR trips are always tricky. We got the call for Dawson’s scheduled OR time Monday mid-day. They base the OR schedule by age (youngest first), and Dawson has always generally been the first case in all of his procedures. That luck ran dry with yesterday’s phone call. Dawson’s OR visit was scheduled for today at 3pm. UGH. I was slightly comforted by the fact that he wasn’t the last case of the day, and even more comforted when she said that D’s doctor typically runs early, so there was a chance that D could be called in early.
That meant no food after midnight. Clears before 11am. And then nothing until after his OR trip. Luckily, clears includes water, apple juice, jell-o, and popsicles. (The funny thing about jell-o is that it couldn’t be store bought – I had to make it from a box. Not a big deal by any means, but I’m used to making “adult” jell-o. It was so much easier to pour the jell-o into 4 different cups rather than a bunch of mini containers!)
There was quite a bit of novelty when he (and by default, Wesley) got a popsicle for breakfast. And by “a popsicle” I mean two. I sent Wes to daycare with purple lips. He looked adorable.
(Sorry for the demon eyes)
Meanwhile, Dawson and I spent the morning hanging out. He only ate a little jell-o, but managed to take down another 2 popsicles while watching Tom and Jerry. Kids LOVE that show! At one point, Tom jumped out in front of Jerry, and it startled D so much that he jumped and hollered. Hilarious.
Of course, as 11 o’clock neared, I kept warning Dawson and counting down the minutes. “Do you want more jell-o? Another popsicle? Drink more water and juice!” At 10:58am I gave him his noon meds and told him to drink up, because then he was done until after his procedure. And at 11:17am, he burst into to tears. “I’m sooo hungry! Why can’t I eat? I’m so hungry!” It was sad and so, so maddening.
Luckily, we got all call around 11:40am, telling us that D’s doctor was running ahead of schedule (!!!), and asking us to come in as soon as we could get there. That was the best news EVER. And it stopped Dawson’s tantrum that he had been having for a full 20 minutes.
It amazed me when we got there – so quick and efficient. Right back to our room. Nurses in immediately. And of course, we knew so many people. Dawson’s nurse was formerly in the PICU and had him while he was in the Burn Unit a couple of times. The anesthesiologist had worked with D during sedations in the past (she also made a crack about us being so late in the day and how that is unfamiliar territory for us. I love/hate that they know us so well). Familiar faces are ALWAYS good. D settled in with his iPad and was as comfortable as always.
This guy rocks.
D’s doctor came in at 1:30 to go over the procedure. I discovered that I somehow was WAY wrong about what they were looking at. Instead of checking the ureter, they were checking the urethra. I promise I know the difference between the two. I don’t know where the disconnect came from, I swear. But while the ureter suffers from reflux (urine being pulled back from the bladder to the kidneys), it was damage the the urethra they were concerned about. Anyway, so he ran through everything they were going to check out, and then within minutes, we were headed to the OR.
Dawson is adorable. So cute. He did great in the OR. I was with him until he went to sleep. And I ended up leaving D in the OR at 2:02pm, a full HOUR before his initially scheduled time. They told me the procedure would be quick – SO true. By 2:30, Dawson’s doctor was back with updates.
The good: there is nothing wrong with Dawson’s urethra.
The bad: I’m not sure where to start. Dawson has a lot more internal issues than we originally knew of. His bladder is 1/3 to 1/2 the size it should be. It is damaged, due to the purpura. There was also something – a cyst? – that they removed to be biopsied. They are pretty sure it was just due to having the suprapubic catheter for so long, but it’s procedure to biopsy something like that. I hate the word biopsy. We are going to start with meds in the next couple weeks to see if we can get his bladder stretched out some more and get more control, but overall, D’s doctor didn’t seem confident that was the long-term solution. His bladder will likely need to be extended. That has two options: use part of his bowels to expand his bladder, or take part of his bladder, and grow it outside the body, to be implanted later. The first comes with what sounds like awful risks – there is a high incidence of cancer after 5-10 years. The second? Can’t happen for another 3-5 years. These might not be fixes, either. Something he deals with the rest of his life. And there are other issues on top of that – more personal issues. Some that may not be able to be corrected, and some that can’t be corrected until he is a teenager. A TEENAGER. The hardest time in your life to deal with things like this.
It was very upsetting. I just hoped that we were past this purpura damage. I cried during that conversation (and on the drive home…and now as I finish typing this…). And the doctor, bless his heart, got teary too. I’m just SO done with this purpura having a lasting effect on Dawson. So sick of all of the things that have been damaged because of it. Hurting more than anything for Dawson, who already has a lifetime reminder of what happened to him when he was four. And now it’s drawn out with internal issues that suck. Sucky. Suck. I’m bitter. It’s not fair that my baby is STILL dealing with this, and that he will be dealing with this for years, on top of what he already had to manage for a lifetime.
The good news is that we got home a lot earlier than expected. We had planned to have Wes spend the night at Bob and Nikki’s, because David is out of town and because I expected that the surgery would start late (isn’t that the way it usually works?!), but we got home by 4:45pm. And Dawson was in tears because he wanted his brother here. So instead of spending the night with his cousin, Wesley came back home. Luckily, the three of them (Dawson, Wes, and Parker) were content to watch Frozen together for a while in exchange for the sleepover that didn’t happen.
So – big D has a long, long road ahead of him it sounds like. Or not? Maybe the meds will do the job. But it doesn’t sound expected. It sounds like we need to be thinking about what is best for Dawson in the long-run. We have a lot to consider.