Today marks two weeks since Caleigh's 10th intestinal surgery. It's been a long two weeks that have flown by, if that even makes sense. I was snuggling Caleigh yesterday, breathing in the sweet smell of her neck, and thanking God that we made it through those hard two weeks together as a family. I'm putting that behind us and looking forward to the next adventure.
Around 4am on Sunday morning, Caleigh's incision opened up slightly and infected pus and fluid started to ooze continuously from the area. She actually woke up in a puddle. We started jokingly calling her oozy susie throughout the day as her tummy got flatter and her condition improved. She really started feeling better by just getting the fluid out.
This morning when we spoke to the surgeons they let us know that this is now considered a fistula. A bad intestinal connection had been in their minds, but now that the drainage has started they are fairly sure this is what Caleigh has. The fevers are trending down with no spikes or need for Tylenol since 1am Sunday. The new antibiotic and/or fluid drainage is getting to the abscessed infection and taking care of it so far.
"Operative trauma is the most common cause of enterocutaneous fistula formation. Inadvertent enterotomies and leakage from intestinal anastomoses result in leakage of intestinal contents with abscess formation. The abscess erodes through the abdominal wall, commonly at the surgical incision site or drainage site. This results in communication of the intestinal lumen with the skin surface, forming an enterocutaneous fistula."
A fistula makes perfect sense. Caleigh doesn't have muscle in the front area of her abdomen. They've been moved and rearranged over her many surgeries. The amount of scar tissue that was adhered to her abdominal skin was extensive. When this was cut away the intestines didn't have a source of blood supply that it normally would from the muscle while healing. The area has been slightly oozing and causing the redness and swelling since the beginning. It finally made its way up and out at the surface. It's a very strange turn of events, but one of the small possibilities with intestinal surgery. Caleigh's surgeon said that she is definitely one of a kind and with the complicated and long surgery that she had he is quite happy with how she is doing now.
Yesterday, Caleigh tolerated four hours at a time with having her g-button clamped. Since the discovery we've opened her g-button to gravity again. They don't want any pressure on the area from the inside while the fistula is healing. Caleigh will continue to receive IV nutrition through the PICC line while we wait.
I'm told that it could take a couple of weeks to months to heal. This is a small fistula so it would obviously heal sooner than a larger opening. This will extend our stay and change feeding plans quite a bit. We have our apartment through hospitality homes until July 19th. Caleigh will remain inpatient in the hospital until the fistula is gone. This should heal on its own without surgery, but time will tell.
Caleigh's lungs are great. The team is still hesitant to drop chest PT and nebs, but they are lowering the frequency each day.
Caleigh was able to leave her room today for the first time since surgery. We went down to the bunny garden and felt the cool wind on our faces. Caleigh chased bunnies and smiled so much. We made our way up to Seacrest studios which is right up Caleigh's alley. She made music requests, danced, smiled, chose the purple room lighting and voted on the best Pixar movie. This is somewhere we will visit again soon, if not tomorrow.
Caleigh is feeling much better and for that we are very grateful. We'll see what path this new plot twist takes in the coming weeks. Please pray for and keep Caleigh's safety in your thoughts as she, hopefully, heals quickly from this.
Details for mailing a letter, card or package to Caleigh. You can read more about sending mail to a patient on Boston Children's website.
CALEIGH A. GRAY
BOSTON CHILDREN'S HOSPITAL
300 LONGWOOD AVENUE
BOSTON, MA 02115