Monday, August 6, 2012

Risk higher than Reward... Tonsils and Adenoids

After waiting three years to get the twins tonsils out.  Getting second and third opinions.  Being told the "the risk is higher than the reward".  And having countless worrisome illnesses...... They got their tonsils and adenoids out last week.  Tuesday, July 31st to be exact.  Four days later we were able to go home. Here is a run down of our crazy week:

Monday:  waited for our surgery time phone call that came around 2:30 pm.  Arrival time in morning was to be 6:45 am.  We had made prior plans with my good friend Betsy to stay with her this night to be closer to our destination for Tuesday.  I tried to give subtle explanations to boys on what was about to happen to the without giving them to much information.  When Tom arrived home we made our way to Pittsburgh for the evening.  As the boys "Last Meal" we took them to their favorite restaurant, Burger King, for their favorite sandwich a Whopper Jr.  Caleb had a front tooth that was terribly loose and I kept asking Tom if he should just go ahead and pull it so Caleb doesn't swallow it.. I have HUGE tooth fobia.. I haven't pulled any of my kids teeth yet;  Tom said since he was being put to sleep in the morning we would just ask them to do it. When Caleb started his Whooper Jr. the tooth was there, when he finished it was not!!!

Tuesday:  5 am wake up time, and our day begins.  We get to hospital and boys are excited to play with toys in waiting room.  Called us back promptly to begin vitals and getting them ready.  As we are going over information about procedures for both boys I realized there had been an error with Isaacs surgery.  He was to have tonsils and adenoids removed and third set of ear tubes placed AND dental work done.  The dental work was not on schedule and quite frankly it was an emergency that he get his teeth looked at while sedated today.  To back up five days, Isaac had an ER trip that totally stumped mom and doctors as to what was wrong.  I thought it was constipation related, it was not.  They check for UTI, it was not.  After giving him some Motrin and settling him down they sent us home.  Next morning we awoke to the left side of Isaacs face is swollen from his eye to his chin.  Back to doctors office to which they "guessed" it was perhaps an abscesses tooth. So I called Children's Thursday and had dental jump in on Tuesdays planned surgery.

It did all work out and we are thankful because Isaac ended up having four teeth extracted.  One of which was most likely the cause of the facial swelling, the other three were baby teeth that needed to come out because the adult teeth were erupting.
Isaac enjoying his room with a view before surgery

Close up of my cutie Isaac on Verset

Caleb having a hard time holding up his head on the Verset

And he's out... daddy putting on his ID bracelet that he wouldn't allow on before this

Both boys were in recovery by 11am.  

We were informed by the ENT that Isaac did not receive ear tubes again as expected.  His right ear they removed the tube and cleaned out the ear wax and found a hold his in ear drum so didn't place tube.   When he looked into his left ear he found a large hole that concerned him.  He stated that we would have to do a hearing test when we came back into his office to see if there was any hearing damage.  He stated that there would have to be something done about this problem, but did not offer options just yet.  Hours of sleeping off anesthesia and they awoke in rater happy moods.  

Love Isaacs cute lil toes peeking out
When asked if they wanted a drink Isaac refused, Caleb was given the option of milk or apple juice.  He chose apple juice and drank one.. then two... then three... then four!!!.... then FIVE.. That is more apple juice than he has ever drank in his entire life??!! WOW I wasn't expecting this.

Wednesday;  Both boys woke up a little more tender than the day before.  Both of them offered drinks in the morning and again Caleb signed Apple Juice and enjoyed his beverage while his brother just looked on.  And from there it went downhill... they ate their ice cream for breakfast, lunch and dinner and no drinking.. we were told that the ice cream counted as a drink so we tried as often as we could to feed it to them all the while hoping that they would not get sick of ice cream before it was over.


Thursday;  Today was the kind of response I was expecting from the get go.  Today the boys had to be coaxed for everything.  They were refusing to drink, refusing to eat ice cream and basically sleeping all day long perhaps to avoid the pain.  When I voiced my concern on their pain level today the nurse explained to me that it was not uncommon for children with Down Syndrome or Autism to have a delay in pain.  Unfortunately, we have a double whammy with this.  It was a day for mommy and daddy to just cuddle with them and try to keep them comfortable.

Caleb yelling at me to STOP taking pictures

Praising God that we had an iPad to entertain them

By the evening assessment Caleb's heart rate was elevated and he was showing signs of dehydration.  We were told to try to get anything in him that we could or they would be hooking him up to IV again.

Friday; Today when they woke up we were right on the drinking for them.  We offered them everything that was available.  Milk, Apple Juice, Choc. Milk, Rice Milk, Ice Water, Orange Drink... Finally, Caleb drank a full glass of rice milk.  We were being discharged!!! They suggested that sometimes kids do better at home in their own environment, and we agreed.  PLUS, we had to leave this day because we were to go and pick up Caleb and Isaac's brother and sister at Pennsylvania Christian Camp in the morning to bring them home from their week long camping experience.

little playtime before our car ride home

Saturday and Sunday; each day we are seeing improvements.  Isaac much more than Caleb.  Isaac is eating soft foods and drinking like a champ.  Caleb is drinking very little and refusing any food, but drinking enough to have a wet diaper.  What we have noticed the most is when they are medicated they are practically normal, without any pain or signs of discomfort.  They watch tv and hum like they are having a jolly ole time.  When it comes time for meds they turn into little tigers.  Scratching, headbanging, crying, screaming, pushing, throwing, you name it.  Isaac is doing WONDERFUL with taking his meds.  They are on Roxicet for pain and Amoxicillian for antibiotics against infection.

So was the Risk Higher than the Reward??  We are still in the recovery phases.  Tuesday through Thursday is the "watch them closely for bleeding" days, so I am on my guard for that.. but so far, other than the refusal to drink and eat they are acting better than I thought they would.  Seeing them in pain is heart wrenching, but usually when we give them their pain medicine they are good for about four hours.  I am so anxious to see how they are in a month.  They are snoring a little still, but I am certain that there is swelling.  Their breath is a little better already and I am a tiny bit hopeful that perhaps they will start talking a little more after they are healed up.


Anonymous said...

Hey Stacey praying for the boys and hoping they heal fast. Here's a little tip that a nurse gave me after both of my girls had the same surgery and ended up back in the hospital due to dehydration. Instead of tylenol w/codine which the dr perscribe use just tylenol. they improved greatly drank and eat much better. Just a thought. your friend in Christ Missy McAninch

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