“Little A” Prepares for Surgery

One week from today Adam will be having surgery to have his tonsils and adenoids removed.  I keep telling myself “it’s just a tonsilectomy” but I’m still worried; it makes me appreciate how lucky we have been these past six years with the kids’ health as I realize some families have had much scarier surgeries to undergo with their children.  Counting my blessings…

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It all started last month when I took the twins in for their 3-year well child checkup.  While filling out a pages-long questionnaire designed to assess the child’s cognitive, emotional and behavioral development, I could see that Adam was scoring higher than Gianna on the behavioral assessment.  There were “red flags,” like the fact that he often doesn’t look at you when you’re directly talking to him or that he is quick to dissolve into a tantrum when he doesn’t get his way.  None of the ‘flags’ alone was enough for me to think the dreaded “A” word (autism), but Andy has mentioned his fears about it a few times.

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So at this well-child checkup, the kids’ pediatrician took the questionnaires and tallied them up, remarking that Gianna and Adam both scored well above and beyond in milestones such a speech, motor skills, cognitive development, etc.  He did tell us that Adam scored on the threshold of “needs further testing” in the behavioral section, though he was quick to reassure us that this didn’t mean that Adam was autistic or anything; just that he may need further testing as he got older.

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Right before we were ready to leave, I remembered that I had meant to mention Adam’s snoring!  Dr. Joe’s face lit up as he connected Adam’s score on the behavioral assessment to this new information; he began to ask questions about Adam’s sleep.  Does he wake often at night?  Does he snore loudly?  Does he snore every night?  Does he fall asleep in the car or while watching TV?  The answers to all of those questions were “yes!” so he began to explain that the manifestation of sleep deprivation in children is much different than it is in adults; adults who are sleep deprived have difficulties staying awake during the day and feel generally lethargic and without energy, but sleep deprivation in children can manifest itself with hyperactivity, vigorous temper tantrums, clingy behavior, etc.  Sounds like Adam!

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So our options were to schedule an appointment with a pediatric Ear, Nose and Throat specialist, schedule an appointment for a sleep study to see if the snoring was a symptom of a sleep disorder like sleep apnea, or to just ‘wait and see’.  Dr. Joe recommended the sleep study, so that’s what we decided to do.  A couple of weeks later, Adam and I spent the night at New River Medical Center to have a pediatric sleep study conducted.  He did really well and I felt like he slept pretty ‘normally’ even with all the wires attached to his body and sensors on his face to detect mouth and nose breathing.  In the morning before we were discharged the nurse asked me how many times I thought he had awoken; I answered “about three?”

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As we prepared to leave, a nurse told us that the sleep specialist normally took around 7-10 business days to review the findings from the study and make a diagnosis.  She told us it could be up to two weeks before we heard the results.  So I packed Adam back up again and we went home.  The phone rang two hours later and it was the sleep center… wondering if we could come in to review the results in just a few days.  That was alarming; I wondered if it meant that his sleep study results had been so worrisome that they wanted to discuss it as soon as possible.  So three days later I took Adam back to the center to go over the results, and that’s when we were told that Adam has “severe obstructive apnea” and had experienced 73 “apneas in total”.  In bolded text on the interpretation report were the words, “The overall apnea-hypopnea index (AHI) was markedly elevated at 26.2 events per hour.”  A bit further down the page read, “The patient experienced 115 arousals in total, for an arousal index of 13.6 arousals per hour.”  I was shocked.

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So the sleep specialist’s recommendation was obviously that we take Adam to be examined by a pediatric ENT specialist for “probable removal of the tonsils and adenoids.”  She assured us that this type of surgery is better to get ‘over with’ and the recovery faster when the patient is a small child like Adam, and that his quality of sleep would be immediately improved after surgery.  Dr. Joe had told us that if Adam’s behavioral “issues” were due to sleep deprivation, removing the tonsils and adenoids might make all the difference.  I made the appointment with the ENT specialist that same day.

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Last week we brought Adam to the clinic to see a pediatric ENT, who examined him for probably two seconds after reading the sleep study report and concluded he definitely needed to have his tonsils and adenoids removed.  His assistant scheduled the surgery for two weeks later, and we immediately went to the lab to have Adam’s blood drawn to be tested for Von Willebrand’s Disease, a genetic bleeding disorder that Andy suffers from.  (It’s like mild hemophilia; as a kid, Andy used to have severe nosebleeds almost daily and sometimes had to be taken to the ER when he had a cut or scratch that was bleeding profusely and wouldn’t clot.)  The good news is that this blood work came back normal; Adam did not inherit Andy’s bleeding disorder.

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Yesterday I took Adam to the clinic again for his “pre-op physical”.  The blood work had already been completed so he just needed to be looked over to make sure he is healthy and able to have surgery next week.  Surprise, surprise — turns out he has a double ear-infection!  However, since his temperature was only slightly elevated (99.4*F) and he had not complained of his ears hurting either before or during the appointment, Dr. Joe gave me a script for an antibiotic but told me not to fill it unless his fever sparked or he complained of pain.  He thought that Adam’s body was already doing a good job of fighting the infection and probably wouldn’t need the antibiotics’ help.  He also said that the infection wouldn’t prevent Adam from having his surgery next week.

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So anyway, I’m trying to remain calm and rational about this entire ordeal but it is still very hard to prepare your three-year-old child for surgery.  I laid awake in bed last night thinking of all the “what if?”s — “What if he has a reaction to the anesthesia? What if he bleeds too much?  What about the downsides to having one’s tonsils and adenoids removed — like increased infection risk, etc?”  I’m afraid I’ll be a wreck when it’s time for him to actually have the surgery, and I’m afraid I’m not strong enough to be there by myself while Andy is at home with the other two children.  I’m afraid he’ll be in a lot of pain after the surgery; will they give him something stronger than Tylenol or Advil for the pain?  But I have to be strong for him so he isn’t scared.  Ugh, this parenting business is hard work!

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Wish us luck and a speedy recovery!  His surgery is next Wednesday at 11:00 AM and he and I will be spending the night so that he can be monitored (because he is so little; apparently they usually send tonsilectomy patients home the same day) and then released the next morning.

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What a crazy, busy and complicated summer we are having already this year!

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