Thursday, January 25, 2007

All clear, for today


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.

5 comments:

ranebo5400 said...

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

Martha Brogan said...

It's all I can do to keep from emailing the Fischers to tell them what an amazing place Children's is- just look at "our" girl. Every sick kid should be there.

Her incision looked so sore yesterday and 4 hours later after an overhaul she's home and raring to go!

You all are doing a super job!

beth brogan said...

I wish I could think of something to do for you two that would give you kind of feeling I get when I see a new picture of the Princess. All I can think of is what heroin addicts must feel like when they finally get a hit. She is just spectacular. I like to imagine the thoughts behind those looks. There's one in particular I imagine her thinking when she sticks her tongue out.

G. April said...

That’s cheating! How do you expect people to read the bog when you put pics like that up!? Every 10 seconds my eyes gravitate right back to her Albert Einstein impersonation!

Holly said...

Hi my name is Holly Botha. I have a daughter with short gut on TPN and because I decided to read about "gut girl" I made a call to Dr. Puder and I really believe for the first time she it going to be ok!! My family and I would like to thank you for this blog and all the hope it has given us. I have read your earliest entries and we have gone through a lot of the same things and reading about it made me cry and laugh all over again. It is good to know you are not alone. Thank you