Made of Gray

Caleigh's 10th Bowel Surgery

Raising the Rare ChildHolly D. Gray1 Comment

Caleigh went back for her 10th bowel surgery this morning at 9:40am. This makes a total of 13 surgeries in the books for our sweet eight year old. 

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This morning Caleigh didn't want to read the prep book that ChildLife had given us. We spent our short morning together getting her cleaned up, washing her hair and listening to a lot of music. Caleigh wanted to get Noel ready just the same. The nurses brought Noel her own gown and she even got a name and allergy band to match Caleigh. We played her favorite tunes up until it was time to send her back. She was hesitant, but happy before we watched her roll down the hall. 

When we got to pre-op, Eric and I pushed for a PICC line before surgery. So they prepped the operating room for a PICC placement first. The line was in by 11am. We wanted this instead of peripheral IVs because Caleigh's veins are terrible. The IV that she had in her arm already looked like it wasn't going to make it. No one was opposed to it and felt it was a good choice. The PICC line gives the surgery and anesthesia teams access for medications, blood products and any emergency interventions that a basic line can't handle. It was a safe spot for us. 

The anesthesia team placed an epidural for pain management. This is the first one Caleigh has had and we are hoping that it helps with the intense pain she will feel. Before Caleigh went back to the operating room they gave her versed through her IV to help calm her down. 

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The actual procedure and opening started around noon. With each update that came through, every 90 minutes, we heard the same thing... "Caleigh is doing well, they are working through the adhesions." Adhesions being that anytime you touch, move or remove intestine it begins to scar and "stick" to itself. Yours and mine are free floating, Caleigh's guts are a big ball of adhered tissue. The surgeons have spent the day cutting them away which is a very long and tedious process. Caleigh's intestines were nicked and stitched back up throughout the process. 

At two points they thought they had found the strictured area. When they brought in Caleigh's GI doctor to scope the free intestines they discovered that they hadn't found it. They sent him on his way and continued working through the adhesions to find the area in question.

By 6:00pm in the evening, the surgical waiting room was closing and we were sent up to 7 South, the Medical and Surgical ICU, where Caleigh will remain until she moves back to 10 South.  

At 6:30pm they gave her one unit of blood. We were told that she hasn't lost a lot of blood considering the procedure and operating time, but she did need some with her hematocrit being 26. 

By 8pm the surgical team was still operating, working on adhesions and searching for the narrowing. She was given another unit of blood. 

At 11pm we were speaking with Caleigh's GI doctor. The team had called him back in because they were sure that they had found the spot. He went in with the scope and confirmed that they found it. His work was done for the evening. 

By 12:30am Caleigh's surgeon came in to talk to us. Her surgery was over after 15 hours in the operating room. He ended up leaving the narrowed area and doing a strictureplasty to save the length and bloodflow. They didn't measure the length while the intestines were out because they left the STEP areas of small intestines intact and still adhered. The narrow area was actually up behind her spleen and colon in a difficult area which is why it took so long to get to it. Caleigh's thing is to scar... heavily, which works in her favor because it cuts down on the risk of malrotation as a complication. She will spend the night with the breathing tube still in place and they expect for her to swell for the next three days. He doesn't think that she will develop compartment syndrome again.  He took a liver biopsy and said that from the outside it looked good. Her intestines will go back to being scarred. Like they were never in there today. Once the breathing tube is out and she is urinating normally we will be moved to a room. Right now he believes that she will be in the hospital for two weeks as previously planned. 

At 1:30am Caleigh was up in the ICU and we were able to go in to see her shortly after. 

Eric and I are exhausted. I'm guaranteeing typos and grammar issues on this one. We've both been up a few hours shy of 24 hours, but we are beyond thankful for Caleigh's medical team and her wonderful surgeon and GI. Thank you again for all of your thoughts, prayers and amazing words of encouragement. Your support has carried us through today and the past week. Thank you for caring and loving our girl. 

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