more news

Nothing really new with Adriana she is doing good and we had her ct scan done on wend we still dont have the results but all went well. They gave her anestesia and she was asleep in 20 seconds, we were then removed from the room and 10 minutes later they let us in the recovery rom where she was asleep. It took 30 minutes for her to wake up, well they woke her up she could of slept more if they would have let her. I also bumped her feeds today to 6ccs an hour cont, lets see how she does with that. I am bumping her feeds 1cc every week as tolerated. so far so good, i will be measuring her output for the 24 hours. Yesterday was the day I was suppose to do ethanol lock on her and I was trying to push out the bubble in the syringe and spilt all the alcohol, so that didnt go so well.

food play

Adriana playing with her food








Adriana was just loving playing with her food, she got more all over her body than in her mouth of course, after this she went straight into the tub and after her dressing change, osotmy bag change and straight to sleep. Of course then it was time for me to clean up

20 hours

Nothing new with Adriana today she will be off for 4 hours from her tpn, so she will start running for 20 hours from now on. I had to check her sugars last night right before connection and they seemed to be fine, 81 was our number. I have to check them tonight 2 times just to get a number and range of where she stands. I dread poking her and making her cry, I just hate it. Other than that Adriana has been having some yellow liquid come out of her NG tube when her feeds are disconnected. It doesnt have a smell or anything but its yellow, what could it be? I think bile is green right? anyone have any suggestions or had anything similar to tis happen? could it just be stomach juices, like acid? well for now I am not too sure what it is, I just hate the NG tube. The connection part gets very wide and its hard to just shut it, it starts to leak and you have to tape it, but then when you want to connect the feeds you have to untape it. I just hate it, ugh well Adriana is doing good

260 is the number

So Adriana's official number for her 24hours on 4cc's was 260. It's not bad, it did come up some from 224 when she was on 3. I was told from her GI that as long as she stays under 350 she should be fine. So of course if she went all the way to 300 from 1cc then i would think she is dumping. I don't believe she is dumping her 4ccs right now. Her ostomy output seems to be getting thicker, she has more particles floating around than just liquidy. Next Friday I will bump her feeds to 5, but so far so good. Adriana has physical therapy tom, lets just see how that goes. Adriana's dad finally got around to building her pushy car and she just loved it. Now that she is able to really sit with no support she was able to ride her car. I pushed her around the backyard and she was just laughing and excited, but her cousin was running in front of her and that she just loved even more. Other than the bumping the feeds nothing new with Adriana, tommorow she will be bumped down to 20 hours on tpn, instead of 22 hours. She will be line free for 4 hours now, besides her NG feeds. Adrianas ct scan is coming up on the 28th and that will show us if her skull is closed or not. Well nothing new for now.

4ccs and OT therapy

Adriana is now up to 4ccs an hour, so far so good, only time will tell how she does or can handle it. Today I will be measuring her output for the 24 hours,fun right? Especially when she wiggles so much that at times I don't get the output in a cup but all over her or her crib. Our number now is 350, so far we have 30ccs since 3pm. She usually averages 30ccs in 4 to 5 hour time frame. lets just wait and see I don't want to get to ahead of myself. If she tolerates this she will be on it for a week and in a week after her body has had some time to adjust I will bump her to 5. Remember this is the most Adriana has been able to handle since she had a lot of her bowel removed. This will also tell how fast the surgeons need to place a gt tube. We took her to feeding therapy which she is not doing so good with. I am not sure if it is the NG tube that she hates, and that may be why she is not interested in having food. She gags a lot and swallowing she hates, might it be because she feels the tube in her throat? maybe, her OT therapist wants to take a brake as in we stop OT therapy for a while and I continue to try at home. She feels that untilll she gets that NG tube out and gt tube in she will advance. In the mean time she doesnt feel this is at all helping.

Good news

So today we had GI clinic it actually went very well. Nothing but good news came from it. Adriana will not be off TPN for 4 hours so she will run 20 hours. It gives us a longer brake and able to enjoy her without any tubes to detangle her from. She is doing very good on her 3cc's of pregestimil that her Dr. told me we will be bumping her up 1cc every week to see what she can tolerate. her new number is 350, it went up 50 from our old number. He is also thinking of placing a gt tube as well. As she becomes more dependent on her formula her NG will not be as dependent as her GT tube. Keep your fingers crossed and hopefully she can tolerate her feeds and then no more tpn. One day she will be line free it may not be tommorow or the next day but some day soon she will. As for her lab she finally has normal lab numbers, NORMAL bili can you believe it? Such beautifull news, nothing but good news did we have today. She will continue to be on ethanol once a week for 2 hours. I was told 2 hours has the same affect as 12 or 4 or 6, so it doesnt make a difference. They only use 2 here at our GI clinic for all patients. So jumping off topics friday I will bump her feeds to 4. Wish her the best of luck.

Nothing new with Adriana she is doing good on her 3ccs of milk which is great, Little by little her feeds will go up and we will be able to really tell what she can tolerate. Can it eventually be enough to get her off tpn? I don't know I guess we just have to wait and see.Every day is something different with her, she makes new faces, new noises and it nothing but a ton of giggles. Although she has a medical condition she lives a very joyfull life filled with lots of love and laughter. It looks like nothing is wrong with her. When we go out and people stare at her I of course get annoyed and she doesn't seem to mind. Better forher more attention which she just seems to love. But don't ignore her because she will scream her little head off. We have GI clinic tommorow and we will see what they alter her TPN to. The ethanol lock seems to be just fine, i finally found a way that helps me be able to draw back the ethanol without fighting with her line.

3ccs of pregestimil

I bumped Adrianas feeds to 3cc's continuously yesterday around 1:30pm. She had been on 2ccs for almost a month now and so I thought what difference would it make if I bumped her up this week before we see her GI in clinic on wend. I know he was going to let us bump her to 3 on wend anyways that was his plan. So far so good, she should not pass 300 for her ostomy output and so far she has 161 and at 4pm it will be 24 hours and I will see what the total is. I hope she doesnt reach 300, if she doesnt reach it then it means she is not dumping and is able to tolerate 3ccs. Keep your fingers crossed. She has never been on 3ccs and been able to tolerate it. the last time she was on 3ccs she started to dump but she was an inpatient ad being evaluated for transplant. Tey had to do all of these GI studies on her meaning they had to fill her up with alot of ink contrast, so I think it was not accurate. The only reason I think she was dumping was because her body was taking much more than 3 and a lot of other junk for her tests. It took 3 or 4 days to get all of the contrast out of her system, so she was still processing it. Now we will be able to reaslly tell if she could tolerate 3 and on and on. This will be what will tell us how much she can absorb, which I hope all her intestines needed was time. I have plenty of faith in her because she is a fighter as you may all tell by now. This will also determine if she will get a gt-tube placed and get the NG out of her nose which of course she hates.

Nothing new

So far so good, Adriana has had a cold but seems like it is not getting worse, maybe even better. She use to have some hard times breathing at night with her nose being so stuffed but has been sleeping just fine these past few days. She has not had any fevers or anything of that sort. She has been having a really horrible smell come from her mouth lately, as well as the ostomy bag. I called GI but they do not feel concerned or think it might be BO. I was told if it were to be that there should be some kind of tummy, pain a lot of gas and things like that. She does not seem to be uncomfortable at all, just a very sticky smell. We will be seeing GI on the 14th and they will see what they think. They do not feel the need to bump her and see her this week, since they cant quite link it to anything. She has been fine and of course easter rained all day but we did have a good easter. Her feeds are still at 2cc but she has been doing fine with that, no dumping and still under our 300 number. Which is always good, hopefully on the 14th she will be bumped to 3 and on and on.