moved on up

... to 14ccs, so far so good. I bumped her feeds and lets just see what happens. She gaines 10 oz in 1 week which is way too much so lets see if they alter her TPN, we will not be going to clinic untill june 23 which we will also see the surgeon and make plans for surgery. Adriana is fighting a ciold, which she does not yet have but is either getting or fighting it off. She only has a cough and of course runny nose, ugh I know she will get better soon. I am still waiting for radiology to call us and set up a appo for her upper GI but no call just yet. I guess they might just be booked or something. Well Adriana was baptised on Saturday and she had a party. She had fun and got to see a lot of kids which she just loves of course. Lets see how the 14ccs go and I will have the rsults later,......

gastric emptying and feeds advance

We got the results back for Adriana's gastric emptying, its NORMAL. Normal is not a really a word for her since nothing about her is normal but I was told the gastric test showed that everything is working. In a hour she showed nothing in the stomach meaning it does what it should do. The last test they did was way back in october and it showed no movement in 3 hours I believe. That was why she was not able to tolerate her feeds, I guess now I know. Well she is doing basiaclly amazing and seems like she might be getting a little cold. She has been coughing the past 2 night and a little ocngested here and there but hopefully she fights it off and doesnt get sick. She needs to be well for this saturday which is her baptism and her big party. Well we will have a upper GI done as well and lets just see what that shoes. Hopefully it also shows a big inprovement like this exam. She has come a long way and is a amazing little girl, I always knew she was capable of more than the doctors credited her for. She also gained 10oz in 1 week so they might also alter her tpn or lets wait and see. She is absorbing all of her feeds and is at 12 so far but tonight in the am I iwll bump her to 13 lets see how she handles that. Shes been a trooper through all of this and has plenty of things to show off, includeing her broviac, iliostomy, and a NG for now. People do stare at her especially kids and I also get a few adults that just cant take there eyes off of her even if you look at them. Weird huh? I guess not it's something Im use to the only thing that bugs me is they look at her as she were from another planet. Anyways lets see how her feeds go.

tolerating

....her feeds, so far she is doing good with the food increase to 12, I still do not have the total for the 24 hours but I am sure she will be just fine.

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.