moving to 12 on feeds

Going up on Adrianas feeds to 12 in the am tonight/ tomm, lets see how she does. I hope she does good but I have been watching her ostomy output and it has come down a good amount. I think she will do just fine with 12 but I am not sure to where she will get to untill she starts to have problems. I hope she doesnt have any problems but I know its very possible and most likely she will. She has not had any problems with tolerating her feeds, she did when she was much smaller and her bili was high but I was also told her stomach did not contract but it should now, since she is tolerating her feeds.

increase on feeds= less ostomy out put

The number for her ostomy output for the day with the increase of her feeds is 164. Strange it seems as the higher the number for her feeds the less she has out? Is that normal, as much as I am happy she is tolerating her feeds I want to make sure this is normal her output varies but has always been very accurate. When she was at 7 she had 203, 8=237,9=181,10=198, and now it has come down some. Well I looked for her abdomen being distended or something and nothing it looks normal and she has not been vomiting, once in a while she will spit up but only some saliva. She gags a ton but thats due to her NG tube, I called GI just to make sure, well told them my concerns and hopefully they call me back and re assure me things are ok. Adriana has a emptying of the stomach this coming week on wend and so wee will see what that shows. I guess that will show if anything is not right in her tummy. My theory is her intestines are adapting to all of the milk she is getting so with time as her feeds go up she is absorbing more and more of what she was putting out as waste before makeing her ostomy output come down. I hope I am right and not wrong,well for now I will keep thinking that her feeds are going great and she is absorbing her feeds. That should keep me good untill I get reassured by her GI team. We will be baptising Adriana next saturday just to get her ready for surgery, we have a consultation on the 23rd of june with the surgeon so he will then give us the big date for surgery. I hope everything goes as planned and she is in and out with no complications. All of her surgerys tend to take long since she does have scar tissue from all of her surgeries she has had. Maybe our last surgery will be reconnecting her stoma. She has no large only about 45 small last time we checked, but she does have a full rectum so she does have something to connect her to. If her intestines are adapting now then we will have a big chance to connect her later. Thats later I am in no hurry right now, when her bag leaks and theres a mess all over the place then I feel she needs to be connected soon, as long as it doesnt give me trouble I dont mind it being there.

Information/surgery consultaion/pics

Her feed increase was a success she is tolerating the 10. WOO HOO! Well we have a appo on June 23 to the the surgeon and have a consulation with him, they will asses her and give me a date for her surgery. i am ready to get this thing out of her nose, it has been a big help but also a big pain not just for me but mostly for her. She has been a reatrooper for having it in her nose for all these months. Even tho she has yanked it out I would put it back in and I think she was just testing me. Here are some more pictures of my little Pinata!!!

up to 10 ccs on feeds and doing well......

So far so good, Adriana seems to be tolerating the increase on her feeds. She is now up to 10 and doing good with it. I'm so happy she has been doing good with that.... at least something are going good. I will have the results tomm, I will finish measuring it today at 2:37 am well tomm early morning. The next time I will bump her feeds will be Friday and she will go up to 11.

moving on up to 10 ccs on her feeds

So tomm am when her milk beeps and tells me her dose is done I will bump her feeds to 10. She did fine on 9 and had no problems whats so ever. So far so good with her feeds this is the best news I have had so far with her feeds and being able to tolerate it. I thought she would never get passed 1 but looks like being on 1 for 2 months or so really helped her gut get use to feeds slowly. Well I will let everyone know the results once they are in. Cross your fingers that she is able to tolerate 10 and pass it without any problems!!! Wish her luck!!!

moving up on her feeds

Adriana is now up to 9ccs on her feeds, she is doing good and it looks like her normal output. It has not gone up but slightly come down so far, she is averaging the same output every 3-4 hours. The good thing with Adriana is she usually puts out the same may very but very little, so I know what is normal for her. I will finish checking the output tomm at 3 am, that will be 24 hours and I will get the number so fer she has 180 I believe. I will bump her next feeds on Monday to 10ccs cont. Lets see how far we can get on her feeds so far so good, thank god. There is no more news I haven't gotten a call from the surgery clinic to set a date for her gt tube but hopefully I get it next week. I can't believe it just looking back on pictures of Adriana when she was smaller and very sick, who knew she would be here now and be doing so good. The surgeons gave me a grim chance when she was small but I guess I can just rub her in there faces now. She hasn't been transplanted or anything just yet, it looks like she has a good change of coming off tpn someday.

Our GI appo went well today... they went down on her tpn, she will be getting less and also they went down on her dextrose. She was at 13 and they are going down to 10 I believe but as she advances on her feeds she will even out. Right now she is at 8ccs an hour and advances weekly. Her GI doctor wants me to advance her feeds by 2ccs each week, monday and friday I will bump her 1cc each day. As she tolerates the big number is 350 as long as she is under she is good. As for the NG tube it is coming out she will be getting a GT tube.... her GI doctor said he agrees with me and so he put in all of the papers and requests. Now all I have to do is wait for the surgery clinic to give me a call and set up a surgery date. It will be done labriscopicly by a peds surgeon, but I am sure they have really good surgeons there. It has been 8 months since she has had a surgery, the last one she had was in sept to get a new line and remove her old one. Her GI doctor also wants a upper GI done and a emptying of the stomach as well. I will also be recieving a call for a date for those 2 exams. He told me the last exam of the emptying of the stomach she had it showed that her stomach does not contract but this was in october. She hasnt had any new exams done since then. Her doctor told me he is sure that her stomach does contract now since she is tolerating her feeds and now vomiting it. Well that is all the good news that we got for today... they did not decide to disconnect her for more than 4 hours but thats ok.. I am very satisfied with what happened today.