She was pretty hungry in the morning and began acting out a bit before Matt took her to the hospital, but overall things went quite smoothly.
The plan was for Matt to take Ellie to the hospital at eight for the ten o'clock procedure. I would head over around eleven and a friend of ours would come to out house to watch Caroline while I was gone.
My friend came over shortly after ten, but as soon as she arrived, Matt called to say Ellie was out of surgery and that I should wait to leave until he had an idea of how she was doing. An hour later we spoke again, Ellie had already eaten a popsicle and jello and there was no need for me to drive to the hospital.
Ellie is on round-the-clock every three hour meds, alternating between Motrin and Tylenol. For two weeks, she is on a soft food diet.
I'm certainly no medical procedure pro, especially compared to some of my friends in the Down syndrome community. (Hat tip to mamas Kelly, Lisa, Jen, Elizabeth, the other Megan, and so many more.)
|Sister photo just for fun.|
However, I know that the T&A procedure is super common among kids with Down syndrome, so here's my not-so-expert tips.
Before. We got some social stories from friends that I failed to print but basically recited to Ellie. We showed her pictures of herself as a baby before and after duodenal atresia surgery and reminded her that she is brave. We told her that she wouldn't get breakfast but could have a popsicle for lunch and told her that eating and drinking would let her out of the hospital and home to play with Caroline.
Wake 'em up for meds. It sucks. Hearing my alarm go off every three hours at night sucks. Waking Ellie up every three hours when she is finally freaking asleep sucks. But staying ahead of the pain is key. I also asked the nice pharmacist at Harris-Teeter for the syringe for 10 mL of medicine when I purchased the pain relievers. Most kid medicines come with a small dosage cup, but at 1:00 in the morning, there is no way that's not ending up all over the sheets or Ellie's jammies.
Noseplug? I was told by most people, "There's bad breath with a tonsillectomy." I was told by ONE honest friend, "It's the worst thing you've ever smelled." I'm glad one of my friends was totally truthful!
Think creatively about soft foods. What foods does your child already like that are soft? And what soft foods does he/she like that are not just sugar? Because a diet of jello, applesauce, popsicles and apple juice is going to put the kid who isn't allowed to be active onto a sugar high and serious crash. (Don't ask me how I know this.) Peanut butter was my personal lifesaver. We have tried French toast, canned peaches, muffins, tamales and scrambled eggs with beans and avocado.
Not a straw. Straw is the last choice for method of drinking, which means open cup. Exhausted child + open cup = water, apple juice, etc all over the floor. We are using a sippy cup unless Ellie is seated at the table. She can drink from an open cup but she needs to drink frequently, even when she's in bed.
Toys and books. We're well into two different Finding Dory coloring books. We're also stocked up on play-dough, shark books, and some new episodes of Shark Week. Some of our sweet friends from church provided little quiet books for Ellie, and I also got out some Handwriting Without Tears materials to work on some good Kindergarten skills and to give us some routine.
We have until July 10 to keep her calm.
We are not long into the 14 day stretch of "no physical activity" and already fighting the "you can't go play out back and run around" battle.
Oh, and if your kid gets steroids.... I'm sorry.