On the morning of Caston’s surgery, I felt my breathing change. It was a little bit of panic setting in as I allowed scary thoughts into my brain.
He’s having surgery because something is wrong.
What if they find something bad?
What if they find nothing at all?
As I entertained all the thoughts and felt my chest tighten a little more, I remembered my mantra. “We’re not gonna worry until someone tells us to worry.” I stopped at a red light and opened the Bible app on my phone. The verse of the day was Zephaniah 3:17.
“The Lord your God is with you, the Mighty Warrior who saves. He will take great delight in you; in his love he will no longer rebuke you, but will rejoice over you with singing.”
We’re gonna be ok today.
We checked in for surgery at 7:30 am, and they took Caston back for surgery some time around 9:15 am. I was able to go back with him to an induction room while they administered the anesthesia. He fought it for a little bit. I sang Twinkle, Twinkle, Little Star (his favorite). Then a nurse requested some Mandarin songs because Kevin blabbed that I sing them all the time. Ha! So I sang Rock a Bye and Happy Birthday in some likely very butchered Mandarin as Caston finally went under sedation.
The gastroenterologist went first to perform the endoscopy. He also collected tissue samples from his esophagus for biopsy. Next, the ENT placed ear tubes and removed Caston’s adenoids. He also performed a laryngoscopy. He also found and removed a cyst that was blocking Caston’s right nasal passage. Caston has both tracheomalacia and laryngomalacia. Individually, these can cause noisy breathing, so Caston has a double whammy! This is also the reason he has had trouble swallowing and what might have lead to the choking incident back in July. On a few other occasions, we have had to take him out of his booster seat at the table because the food seems to get “stuck” and causing him a good deal of panic. So now we know why. We just have to keep a very close eye on him. He should eventually outgrow these conditions. It might take him longer than a “typical” child because of his, well, neglect. (I hate that word. It sounds so harsh and intentional, yet on some level it is true. In a place with twelve children and a couple of caregivers, Caston simply lacked exposure to the practice he needed very early on to coordinate the timing of sucking his bottle and swallowing properly. He drank from a bottle with a cross cut nipple. The thickened formula just flowed down his throat when he made minimal biting motions. His muscles are just now getting the use they’ve always needed since we have transitioned to more appropriate cups/bottles, as well as our introduction of solid foods.)
The surgery seemed to go by fairly quickly, as we had Caleb there to entertain us. And Caleb was a champ! He was so, so well behaved the entire morning. We spoke with both surgeons about the prodecures, and a nurse took us to recovery. Our poor little Caston was very unhappy upon coming out of the anesthesia. He fought so hard trying to pull at all the cords, especially the IV which was in his left hand. It prevented him from sucking his left thumb, likely his only source of comfort for most of his life. I had to restrain his arms and legs as he thrashed around for quite a while. He was so upset that his breathing was being affected. He would scream and then try to inhale quickly, and the sound was horrible, almost like a croup-like bark every time he tried to catch his breath. The ENT and anesthesiologist were considering keeping him overnight to make sure his breathing was under control. Fortunately, after an hour and a half, he settled and his breathing returned to normal. Notice, he finally worked that thumb into his mouth!
Once we got home, I spent the rest of the afternoon with a sleeping baby in my lap. Braden, Annalise, and Waverly were so understanding and helpful. When they got home from school, they all helped entertain Caleb so Caston wouldn’t be disturbed.
A week later, Caston is doing well! He is still on Amoxicillin and ibuprofen. I’ve read that the pain can persist for up to two weeks after the adenoids are removed. We heard back from the biopsy of the esophagus and the pathology for the cyst yesterday. The gastroenterologist said that the biopsy showed evidence of reflux and to continue using Prilosec. The ENT said that the cyst is simply a congenital growth that requires no more treatment or follow up. That is IT! We are so thankful. So very thankful. We flew home from China with a very developmentally delayed toddler with a heart condition and breathing problems. After four months of referrals to more and more specialists, we are so thankful to say that of all the appointments that could have given us very bad news, we have walked away praising God for one giant sigh of relief after another.
For now, we only have follow up appointments scheduled. We will continue to work with our county’s early intervention therapists. Caston’s next major goal is speech. At the time, he uses no words, but man has the babbling and singing taken off! We are going to work to teach him some signs until the language comes. If it moves at the rate of his walking and eating has gone, you’d better expect another little loud chatty Phillips kid in the next few months! We will also be meeting with a physical therapist to determine whether or not he needs orthotics to encourage his feet to turn in as he walks. He currently has a tough time with balance because his feet turn out quite a bit.
He’s been through so much in his very short time with us. But it’s certainly not holding back his smiles and laughter. He is truly a joy to our family.