Button Change

December 11th, another new Button.

This button change was different because was prescheduled and we actually made it to the appointed day without issues. Ellie was given her meds, the pump was shut off, lines flushed, and she was prepped as needed at home for her procedure.

What are the different button types and why does she get hers changes so often? Also what exactly do they do when they change her button and why is this such an ordeal for her? Good questions.

First off what is a feeding tube? A feeding tube is a medical device used to provide nutrition to an individual who cannot get enough by mouth. This may be due to swallowing issues or to supplement their current nutrition because of acute conditions or chronic/severe disabilities. Feeding tubes are given to premature infants, disabled individuals of all ages, cancer patients, and multiple other medical issues.

The Nasogastric or NG tube is a long thin tube that runs through from the nose, through the esophagus, and down into the stomach. These tubes are meant for short term use and do not require surgery.

The Nasojejunal or NJ-tube functions simular to the NG tube. However, this one runs through the nose, down the esophagus, through the stomach, and down into the duodenum, the first part of the small intestine. This long this feeding tube must be placed by a team in the hospital under x-ray guidance.

The Gastrostomy or Gastric Feeding tube (same thing) also called a G-tube, (sometimes called a percutaneous endoscopic gastrostomy (PEG), abdominal surgery allows for feeds directly into the stomach.  Once the stoma (or hole for the feeding tube) has healed enough the parents can change this tube at home.

Jejunostomy tube. Like the G-tube this tube is surgically placed in the abdomen. However unlike the G-Tube, feeds by-pass the stomach and enter directly into the second part of the small intestine, the jejunum. This tube is replaced via an endoscopic procedure.

The Gastrojejunostomy feeding tube is a combination of the G tube and J tube. The G-tube portion feeds medicines and or nutritional support (if allowed) into the stomach, while the J portion feeds meds and nutritional into the jejunum.

Ellie has the GJ-tube combination and for some reason her body seems to need to have her button changed every 2-3 months.

A typical button change for us starts at 9pm. Her formula stops and pedialyte begins. By 2-3am pedialyte is also turned off, meds given early, extensions flushed, removed, and I do a final check to make sure (again) I have everything in her stroller for the day. (yes I have a special stroller for her.)

We arrive at the hospital at the appointed time (usually 3 -4 hours before her procedure), check in, start the paper work, meet her team, the anesthesiologists, and go over the plan for the day. She meets with Child Life as well and explains the whole process to everyone involved. By this point they start hooking her up for the monitoring she will require during anesthesia, and she just jabbers away to everyone while watches TV.

Yes, to her is just another day for her. When it is time to go back she always makes sure her toys have a blue hat and outfit to as after all "they are coming and staying with me to watch over me during the surgery" she tells the Dr's.

Once she is out I slip out with her toys and they hold her special place in the stroller that save the hospital the use a wheelchair and an escort out of PACU (unless we have to head back to floor 10.

Yes the main reason right now I take the stroller for all her procedures is because the kids are not allowed to walk. Not to mention she has no energy and just does not have much distance walking strength after a procedure. Talking her stroller (which is actually considered a push chair) and has a weight limit of 150lbs total load carrying I know we are good with it for a while.

While she under anesthesia the team removes the old GJ tube, and endoscopy guide, they thread the new in place. Once she has been move to the PACU the first thing I do is replace her toys exactly where they were before she was out. When this done, I sit there gently stroking her soft red hair and talking to her in a quiet voice until she wakes up. When give her own time to wake she will slowly wake up and turn over with a smile. Many times she has asked me when she going to get her new button because she is so tired.

The only times she wakes up crying from anesthesia is when she is sick or had major surgery. She is offered apple juice and once she can keep juice down for a set amount of time she is allowed to get dressed and then we are discharged. very often, her procedure days are 10-12 hour days. We are always so glad to be back.

This last time she told me how sad she was for the 3 kids that had to go to floor 10 and not go home like she did.