This morning Colten had surgery #10. Thankfully, it was a simple outpatient one and we are already home!
If you look back on posts, you’ll notice there is no defined surgery #9. His big 13-hour surgery this past summer was #8 (bladder work) as well as #9 (intestinal/bowel work).
The primary surgical procedure for today was related to his big surgeries this past June. Today he had a dilation done to combat a somewhat common issue called stoma stenosis. It requires sedation, which he despises. I don’t blame him!
(Excuse me while I scatter throughout this post some fantastic photos of this kid’s expressions from our trampoline…)
I’ll come back to that in a minute…. because there was a second piece that came into play this morning.
When Colten’s first round of ear tubes (placed April 2015) worked their way out, one of the tubes got stuck in the ear canal that was full of wax, despite the ENT office telling me such a thing was “highly unlikely” when I called about it. I could see the tube through our home otoscope (yes, we own one, and I’m sure you’re not surprised by that by now!). The ENT checked him out he determined the tube was in fact stuck in there, but so deep that he preferred to remove it while he was sedated. So the ENT pulled it out under sedation while putting in Colten’s second round of tubes and removing his adenoids (March 2017). Fine… All good.
About a week ago, guess what fell out (as they are supposed to), and guess what, although “highly unlikely”, got lodged in the same child’s ear canal, again!!!
So knowing Colten would already be under sedation for the dilation, my Momma Bear wheels started turning. How convenient if they could just remove the ear tube while he’s already sedated. Right? Of course right! (Cue Fiddler on the Roof music…)
Medical Advocacy Tip: It never hurts to ask… you might get exactly what you want and exactly what your kid needs.
So last week, I texted his AMAZING urologist, Dr. Liss, who would be performing today’s procedure and said, “I know you think I’m already crazy but…” and explained the situation and asked him if he could just go in there and snag that tube out while Colten is under anesthesia. Within about an hour, he had secured an ENT to come in during surgery and get the ear tube extracted so that we don’t have to deal with another sedation in the near future for something so minor!
This is not the first time we have requested multiple yet unrelated procedures or exams all done at once within a single anesthesia with him. It reduces how many times he has to get put under when we can group these things together. It takes some push and heavy coordination but we’ve experienced success at both U of M Mott Children’s and Beaumont Royal Oak Children’s. I highly recommend this when feasible for any child. You can dictate and coordinate your child’s medical care if you push for it and have doctors that truly care about what’s best for the child.
On that note, let’s go back to Colten hating sedation. This kid has experienced it enough times that he knows he hates the mask. He hates the smell, and he hates “going to sleep.” So I asked Dr. Liss what options we had. Either mask or an IV inserted. For a couple months now, I’ve talked with Colten about these options, as a hypothetical. He kept telling me, “I’m still thinking about it.” Then finally I asked him, if he absolutely HAD to choose, which one did he prefer. He chose “the poke” (IV).
Medical Advocacy Tip: Involve your child and let them help make appropriate decisions. They will learn to be their own advocates.
So when anesthesia called for the surgery pre-consult a few days ago, they thought it was quite comical that a 5-year-old was requesting what type of sedation he wanted! But he got it!
This morning was a bit emotional though. We had not told Colten that this surgery was scheduled, to avoid any undue stress and anxiety he would have leading up to it. We’ve been struggling every day for a couple months now with this one particular stoma and talked with Colten about getting it fixed. I had repeatedly told Colten that eventually we would need to get it fixed, but we would wait – it wasn’t urgent. I even said we would wait until he agreed to it. #momfail
But the process has become so difficult at times that it just had to get done. Knowing spring break was coming up, we were able to slip into the surgical schedule while everyone is home from school. This morning, Richard and I woke him up with a big hug and a kiss. As he wrapped his arms around me, I said, “Daddy and I are taking you to see Dr. Liss today. He needs to fix your belly button.” And then came the tears. I was at least relieved that he didn’t get mad and angry; he was definitely sad and scared. I pretty much carried him around the house for the next 10 minutes or so as we got ready to go – he didn’t want to let go of me. When we got to the hospital, we asked if he wanted a piggy back ride in or wanted his wheels. He said, “No wheels – just carry me, but not a piggy back ride.” Absolutely buddy. Absolutely.
We reported to Royal Oak Beaumont this morning at 9:30am. We were called back to pre-op rather quickly and then there were more tears (this time from me) as Michelle, from Child Life, came to greet us. She was incredible through our summer procedures and extended stay here and her meeting us this morning as we came in was just an incredible, touching act of kindness. I was quite touched that she remembered Colten and us, and she even recalled that he enjoyed Paw Patrol!
Once in pre-op, Colten remained on my lap, on the bed, through it all. While not a lovely experience, Colten did pretty well with the IV considering it’s a big needle and poke. Such a brave kid. He amazes me that he wants to watch, know what everything is, and wants to understand what is happening. It’s definitely a coping mechanism for him and we find he cooperates much better when he understands what is going on.
Due to some morning surgeries for other patients taking a bit longer than expected, Colten didn’t get wheeled back into the OR until 12:10pm. The Versed through the IV worked much better for him than the oral doses in the past so I wheeled back with him to just outside the surgical room and left a very groggy, sad boy calling for Momma. Always breaks my heart…
At 1:30pm, Dr. Liss came to talk with us as surgery was done. He was able to do exactly what he planned with the dilation, and placed a MIC-KEY button that will remain in place for at least six weeks. He did a full scoping of all the bladder work from June while he was in there and everything looks beautiful! Yay!!
After we returned to the waiting room, Dr. McBrien came out and said she cleared quite a bit of impacted wax from both ears and that BOTH tubes had dislodged and were stuck in the ear canals. She said his ear drums had already healed up nicely and there was no fluid at this time; she’s hopeful he won’t need another set of tubes but that will only be determined with time.
We went back to see Colten at about 2:15pm, got him to eat a popsicle, some Golden Oreos, and were headed home by 3:30pm.
Since I promised this kid a trip to Build-a-Bear after this surgery, that’s where we are headed later this evening! Off we go…
I am grateful for knowing all of you, and appreciate your perseverance and strength.