And so it begins

Today Shannon will go to Gillette to have her Gastrostomy tube changed to a Gastrostomy/Jejunostomy tube or G/J tube for short. It is done in the X-ray department via fluoroscopy. It shouldn't cause much discomfort, but all procedures cause anxiety for Shannon as she's had so many and becomes very anxious as soon as we walk into Gillette, well really any doctor office. She can't have any feedings after 8AM and the procedure is at 11, so hopefully she won't be too hungry. We gave her some Diazepam or Valium to help her muscle tone and also, hopefully, to help her relax overall.

Mark and her brother Jonathan will accompany her today - many strong arms will be needed. After the procedure they will meet with the PICU - Pediatric Intensive Care Nurse - to tour the area and get any questions answered. Then the lab for some blood work. This is always tough for her as she is generally a hard poke, as they say.

Tomorrow our day begins at 5:30AM when she gets her last feed and we will arrive at the hospital at 7AM. Her surgery is scheduled for 8:30AM and expected to take about 5 hrs.

We have those mixed feelings of dreading tomorrow and anxious to get it over with. It's been hanging over our heads for about 4 months now and so in some ways, at least I, am ready to get it over with. The getting over with it part will just be a long time - about a 6 month recovery time.

We know it will be months before every move in bed, in and out of her chair, in and out of the bath will be done with any kind of comfort. It seems selfish to even mention, but after her hip surgery it was almost 6 months before we could care for her without causing her some kind of pain. It's a slow process from extreme screaming from every movement to cringing, but it takes a toll on her caregivers - a different kind then what she's experiencing of course, but a toll nonetheless.