We had an afternoon with the Short Bowel clinic and came home. we were placing odds at 60/40 that we would be admitted for line work, but all of the knowing folks at the clinic looked at her line site, told us that we were right to come in, but the line looked good. The discharge was most likely due to old sutures on the line that were necessary after it was installed but have just become irritants since the insatllation.
We cleaned her up, changed the clear dressing over the line and came home. No antibiotics, no further treatments.
We got good news during our clinic visit beyond a thumbs up on her line. ellie is growing very well and is in the 50th percentile on the weight chart and the 75th percentile on the height chart. Long and skinny but doing well.
Based on her good growth and the progress that we have made with feeding her (up to about 250 ml per day) the doctors have decreased her PN by 10 percent which brings her down to 12 hours on the pump each night.
This means that our evenings of chasing her around with the pole and trying to keep her from tangling on the lines may be over for a while. She usually goes to sleep around 8 and sleeps until 8 the next morning. Yes she sleeps 12 hours at a clip since she doesn't get hungry on PN so she will sleep right through her PN cycle.
This is good news for us and an indication that the train is moving in the right direction even with the speed bumps.
1 comment:
Hi. My name is Tracy Fischer. Hope you don't mind a total stranger leaving a comment, but you and your wife could really help my husband and myself in regards to info. on short gut and the Children's Hospital Boston. Our seemingly healthy 2 year old suffered from a midgut volvulus the day before Thanksgiving. He was life flighted and treated at Penn State Children's Hospital. He has only about 30cm small intestine and all of his large intestine. We are thinking about moving Caleb to Boston for treatment. Would you agree that is the way to go? Have you heard of anything negative in regards to Omegaven? We would appreciate talking with you guys. Our email address is fischfarm@sbcglobal.net
Thanks,
Tracy & Andy Fischer
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