The Do's & Don'ts of Aunting

Finally it was determined that Elyse had gallstones.  But that one and only pediatric specialist in the city who could remove them only did so on Fridays. (Most GI physicians aren’t licensed to work on children under 16 due to the high cost of malpractice insurance; Elyse is 15.) So she was checked in and stayed in the hospital until then. The diagnosis was a surprise and something unusual for her age and for her health, as she is an athlete and in great physical condition.

So late that Friday afternoon the pediatric GI specialist did laparoscopy, removing four gallstones safely. We were all relieved after so many weeks of Elyse being in pain, and by this point she had missed two weeks of school.  She stayed overnight in the hospital and late Saturday afternoon was released to go home.  The doctor did recommend that Elyse would need to have her gallbladder out since gallstones would/could come back, but suggested doing so during the summer when she was off school since she already had missed so much.

She went back to school on Monday, made it through most of the day, but by the end of the day she was having the same intense pain.  So back to the emergency room she went, and by this time while she didn’t verbalize it, Elyse was getting so frustrated – she was getting tired of nurses poking her, putting her on an IV, taking blood. She was tired of being in pain. And she had good reason. She wanted this to be over!  But the gallstones were back right away and they needed to schedule gallbladder surgery. 

Once again my sister-in-law and brother faced the hospital and healthcare bureaucracy and that there was only one GI pediatric surgeon that could really do this procedure.  And now he was out-of-town.  The hospital wanted to put a feeding tube on Elyse along with a pain IV, and have her stay through the weekend until the following week to do the surgery.  This was ridiculous!  Elyse would have had to wait over seven days to schedule the surgery (as a result, now missing almost four weeks of school).

My sister-in-law had talked to the hospital’s patient advocate, as well as making a few more calls trying to get someone to do emergency surgery within a day or two rather than waiting another weekend, going into the next week.  Apparently pediatric surgeries were primarily done on Friday at the hospital, so that Friday morning the round doctor said they would talk to the general pediatric surgeon on duty to try to work Elyse in so she wouldn’t have to wait over the weekend into the next week. 

The doctor on rounds said late that Friday afternoon that the attending surgeon knew of Elyse’s situation and getting scheduled for surgery would all depend on how the schedule was proceeding since surgeries were completed by 5PM.  The patient’s advocate and the other call pressure must have worked, because at 5PM the doctor on rounds came in and let Elyse know that they were going to do surgery soon. Finally, sometime after 6PM they took Elyse to surgery and she had her gallbladder taken out via a laparoscopic cholecystectomy.

During this surgery, a laparoscope (a small, thin tube with a camera on the tip of it) is used to remove the gallbladder. Several small incisions are used instead of one large incision. The laparoscope is put into the body through a tiny cut made just below the navel. The surgeon can then see the gallbladder on a TV screen and do the surgery with tools inserted in three other small cuts made in the right upper part of the abdomen. The gallbladder is then taken out through one of the incisions.

Elyse made it through the surgery with flying colors! Her three incisions and the one in her belly button were her badges of honor. She stayed in the hospital of course on Friday night and again on Saturday, but was able to go home on Sunday afternoon.  On Monday, school was out for a teacher’s conference, but she finally went back on Tuesday (after missing almost five weeks of classes!).

Elyse gave me permission to share this story on my blog. She wants to get the word out that kids can and do get gallstones. She wants to let people know the challenges her Mom and Dad had dealing with emergency room physicians, the rounds’ doctors, the specialists and the surgeons. You would think when a young teen girl suffers with pain that it wouldn’t be so routinely dismissed (until she was finally diagnosed, Elyse believed that many of the doctors thought she was making this up to get out of school or something)! She wants to warn other parents/kids that there are very few pediatric GI specialists in this city, even in the country. She wants to let others know that gallstones are getting more common in teens.

But I wanted to tell the story to show how brave and patient Elyse was. How much courage she had when she went through two surgical procedures on back-to-back Fridays. How strong she was to suffer through weeks and weeks of pain.
She got back to school just in time for finals and had to catch up five weeks of lessons. The school was awesome in developing an action plan for her to do so quickly – they delayed her finals by a few days and gave her some time to finish her Freshman year.

She had to read The Odyssey, and write a report on it as part of finishing her honors English class. (Fitting, since she had been on her own odyssey.) She had to catch up on lost weeks of math formulas and Spanish vocabulary. She had to rapidly catch up on chapters of reading for her Religion and History classes. And as the last bell of the year rang loudly signaling to the kids that “school’s out for summer,” she sat all alone in a classroom making up missed tests and taking her finals as all her friends ran out the doors to begin their summer.

Like I said at the beginning of this story, she made second honors, pretty remarkable for missing about 30% of the semester. And while she didn’t get to complete swimming on the varsity team or be in any tournaments, she’s swimming competitively this summer with a coed team, achieving new personal bests. But Elyse shows her personal best at all times – never complaining, never crying, always keeping her sense of humor and gregarious personality, and always worried about others.

I’m so very proud of my niece and how she handled herself during this ordeal. And I hope she rejoices that her Freshman year is over, and has a wonderful summer!

(Here’s a video from February 2010 when Elyse was in 8th grade and swimming with the Kansas City Blazers Swim Team…just a few shots before the meet started.)