Nathan is Hebrew and means "gift from God" - we couldn't have been more blessed than to have been chosen as his parents!

Thank you for keeping up-to-date with Nathan. We hope you visit often and enjoy experiencing our son's journey as much as we do. Please feel free to leave comments.

We love hearing from everyone!!!!

Tuesday, September 13, 2011

The Children's Hospital at Albany Medical Center: The Not-So-Typical Surgery

Two days after Nathan enjoyed hanging with his favorites at Sesame Place, he underwent surgery for the removal of his tonsils and adenoids. He also had his ear tubes replaced.  We understood this procedure to be routine for many children.  We were told he'd be sore after, but once he came out of the anesthesia, we'd be able to take him home.  Our instructions consisted of administering pain medicine, making sure he drank, and serve him cold/soft foods until he recuperated, which would take about a week. YEAH RIGHT!   

Here are a few pictures taken prior to the procedure.  Thankfully, Nathan's Aunt Kathy let us borrow the iPad because Elmo helped Nathan through the pre-op phase. 

Elmo, Daddy, and Nathan on their way into the operating room. 

After surgery, which went fine, Danny and I went into the recovery room just as Nathan was waking up.  It was a really heartbreaking experience.  He was so upset.  There are no words to accurately describe watching your son in that state and unable to communicate with him.   It was obvious he was groggy, hoarse, disoriented, and in lots of pain.  It took a long time and some morphine before he calmed down, but then his oxygen levels began to fluctuating.

We were told that normal oxygen levels measure at a minimum of 92, and Nathan's levels were dropping into the low 80's.  Doctors made the decision to give him oxygen and keep him overnight for observation.

It wasn't long before Nathan's next obstacle reared its ugly head.  With his oxygen levels fluctuating and his pain becoming more apparent, Nathan began refusing to take medicine or drink anything orally. Trying to give Nathan his Tylenol with Codeine was like trying to put a square through a round hole ~ nearly impossible (unless the square is smaller than the circle).

Things reached a breaking point, when in the middle of the night, Nathan held his breath rather than  swallow the medicine and his face turned dark red.  The nurse had to tip him over and begin forcefully patting him on the back, so he'd spit the medicine out and breath.  That was the final straw - we had to find another approach.  Our saving grace was the IV Nathan had been given during surgery.  His meds and fluids would now be administered intravenously, until such time that he could begin to take them orally and drink on his own.   He also began to run a temperature, which was expected with this type of surgery, but just added to his list of complications. 

Nathan was released a few days later after drinking a bit and eating some apple sauce.  He really seemed to be on the mend.  This was late Saturday afternoon.

We made the decision to discontinue the Tylenol with codeine because it tasted so terrible and he had such an adverse reaction to it.  Instead, we opted for the every four hours of alternating regular Tylenol and Motrin. 

Once we arrived home, giving Nathan his medicine proved to be yet again, a major challenge.  It took two people to administer the medicine (one to hold his hands and head and another to squirt the dropper of yummy white grape Motrin into his mouth).  He was completely uncooperative and the ritual became a traumatic experience for us all.  Problem was ~ without medicine, he wouldn't eat or drink.  From late Saturday afternoon until Monday morning, Nathan had one wet diaper (not counting his bath where he may or may not have gone pee).  Dehydration was setting in.  I knew it.

On Monday morning, I made the decision to bring Nathan back to the ER, but then Danny suggested taking him out to eat.  He thought maybe a change of scenery would be enough of a distraction that he might actually eat and drink.  So, off to the Cheesecake Factory we went and guess what?  Nathan ate and drank more than he had since before the surgery (cheesecake, french fries, and Sprite with Cranberry juice)!  YEAH!!!  It worked!   Daddy's a genius!!!

Unfortunately, it was short lived.  By midweek, Nathan had begun to develop a thick mucus in his mouth.  He had been having thick discharge from his nose, but we were repeatedly told this was all normal.  The doctor just kept stressing the importance of Nathan getting enough fluids and that we should really push them.  Yeah, sure.    How do you "push" fluids on a three-year old child with Down syndrome that doesn't have the ability to understand what's happening to him?  We didn't have the luxury of communicating the consequences of not drinking.  We just had to do the best we could, hope for the best, and deal with the consequences.   

When Nathan woke up from his nap Friday afternoon, I made the decision to immediately take him back to the hospital.  The mucus in his mouth was so thick I was afraid he was going to choke from just breathing.  This wasn't normal and I was beside myself with worry and furious with the nurses at his doctor's office who seemed to be complacent to what was happening with Nathan.

It was the right decision.  Nathan was dehydrated and at first glance, they thought the mucus may have puss from an abscess that in his throat.  Nathan had also lost five pounds since his surgery, which for a child who only weighs 30 pounds, is a lot of weight!  It turned out that Nathan was only dehydrated (only - uhg), and after some much need fluids, the mucus disappeared. Thank God.  Nathan was again admitted into the hospital for fluids, meds, and observation.    

Three days after we arrived for our second stint at the Children's Hospital, Nathan seemed to be on the road to recovery.  He wanted out of bed, he was happy, began eating and drinking, and overall seemed to be feeling better. 

The Terry Family would like to thank all those that offered and showed support for our family during this very difficult time.  Thank you for making food for our family, so I didn't have to worry about cooking and without, I probably wouldn't have eaten.  Thank you to those who came to visit and my sister and mother-in-law that stayed with us some nights until Nathan and I both fell asleep.  Thank you to all those who consistently checked in on us, prayed for Nathan and our family, and for those who brought/sent thoughtful gifts and cards. 

We've closed the book on this chapter of Nathan's life.  In hindsight, we would have gone through this again, but would have just more prepared.  Nathan's tonsils were so large they were almost closing off his throat and his enlarged adenoids were causing him to stop breathing while he slept.  The surgery wasn't an option. 

Since his surgery, Nathan is sleeping better than he has in his entire life.  He went from waking up at 5:00AM or 6:00AM after a restless night to sleeping soundly until 8:00AM or 9:00AM!  I have to wake him up in the morning now!  It's so weird and awesome all at once! 


Anonymous said...

I have to agree Kandi, this is one chapter that doesnt need another read, once was definitly enough. Im so glad to see you doing so much better Nathan, all we have to do now is put back on those 5 pounds you lost.

Love You,
Aunt Domenica

Carol said...

So glad to hear he's feeling well again. Poor baby. Must have been exhausting for all of you.