Lyla was admitted again the end of July with the same ileus/blosckage issues she was have in June. They rested her gut, and did Sonogram,Upper GI, and Barium Enema again. All the doctors knew we had talked about surgery our last admission, but Lylas surgeon was out of the country. The surgeons felt nothing emergency needed to be done, but they lowered Lyla's feeds tremendously and she was sent home and scheduled an appt. with her surgeon a couple days after. He also felt since Lyla was doing somewhat better with her feeds lowered that he did not want to operate unless she continues to have issues.
Well not even weeks after that discharge, Lyla was admitted once again on Aug 17th, this time her vomiting was worse and she had stopped stooling completely. She had a sonogram that confirmed we were dealing with the ilues, the same part of dilated bowel as the last couple of admissions. They stopped her feeds and put a nasal gastric tube to suction her stomach, we also drained her gbutton. This time I knew she would be having he STEP procedure.
The STEP Procedure makes the dilated bowel thinner and longer. Which is exactly what Lyla needed because when that part of Lylas bowel would get full it would not push things through, it would just stretch width wise like a balloon.
on Aug 21st she went to OR for her 7th major gut surgery. This one being the most major of them all. The surgeon was able to give her 7 steps which gave her an addiction 20cm of small bowel. So her total now is estimating around 143cm.
The first couple of days post-op were very rough, she needed oxygen, had fever and we had a hard time controlling pain. We had her up walking only 15hrs post-op which is very important for hr to get up and move around as much as possible, so that the scar tissue doesnt form and her bowels get moving. She was doing good and willing to walk by Saturday morning, but then sh started being lethargic Saturday afternoon, hey checked her blood count and it was pretty low, but not transfusion low. She continued to be puny Sun - Tues morning, but started acting a little like herself Tues afternoon. And today, one week post-op, has been a good day.
The hardest part is pain control, It took a few days to get her to a regimen that worked for her, which was continuous Dilaudid drip with pain button and bolus dose as needed along with Tylenol every 6hrs and Toradol every 6hrs staggered 3hrs from Tylenol. but then they needed to start weaning pain meds. Which is important for her bowels to wake up & also important for her liver and kidneys. She is down to just her pain pump button as needed now, which shes needed every hour. Yesterday She had to get a new IV in her wrist because the one inher arm had gave out, yesterday they also removed her ng to suction, and today they started clamping her g-button for 4 hours, then draining for 4 hrs & repeat. That way she is getting some stuff through her bowel but not a lot. Shes been having some small vomiting (mostly mucusy) since surgery. but she also had he tube down her throat which caused a lot of irritation. Surgeon is looking into starting a little feeds here in a couple of days as long as she isnt continuing to vomit, and if her xray looks good. It will be a sow start, but as soon as she starts something, then she can have oral pain meds, get rid of the extra iv in her arm, and cut back even more hours off TPN. She will be back to my backpack baby!!!
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