Day Six

Oh sweet little Ruby. Another tough day. It started with being NPO (nothing to eat or drink) since midnight again. They put an NG tube (feeding tube in through the nose) in for her to be able to do the  upper GI test because she has not been drinking and they need her to drink for the test. Well, she was so hungry by 11am that she drank for the radiologist and he didn't use the tube at all!

After the GI test we had enough time to get a little lunch in before heading to audiology. I think her hearing is fine but it is part of the genetic workup. She did not want to play with the audiologists today so we had to schedule an appointment as an outpatient.

Ruby and I had another special visitor today. My friend Megan Ramspott came and brought me dinner and dessert!! Yum!! Ruby was very playful with her since she didn't have any needles or a stethoscope!

The GI doctors came in to tell me that Ruby does not have anything structurally wrong with her esophagus, stomach and intestines that they could see. I asked the radiologist that did the test if he saw the nissen and his response was, "If I did see one it wasn't a very good one." So to sum up, the nissen procedure that was done in China either wasn't done correctly or does not work anymore, which explains why she can vomit. They did notice that she still had food in her stomach from dinner last night (which is not normal). With there being no structural deficits, it is presumed that her muscles are not pushing the food through properly. To help the process, they started her on a very low dose of erythromycin. This is suppose to help her stomach empty regularly. They recommend that I continue to trial her on all foods and see the results from giving those foods. She needs small amounts of food several times a day due to stomach atrophy. This occurs when a person had been deficient of nutrients for a while and when nutrition is re-introduced, it needs to be done slowly so the GI tract has time to respond. They did not feel an EGD was appropriate right now.

Then speech therapy came again to see if she would tolerate a different kind of cup with a straw. She didn't mind it, and figured it out but did not like the liquids (soy milk). Baby steps......

Then the ophthalmologist came in to assess her eyes again. She had to be dilated again and of course does not like that. Megan and I left the room when they were doing the exam. The report is, her eyes are good and their findings have nothing to do with a specific syndrome so that is great news.

The occupational therapist tried to see her two times and she was unsuccessful. Maybe tomorrow.

For dinner she ate well and I gave her 3 ounces of soy milk through the NG tube. She kept it all down but had more diarrhea and was irritable for 2 hours after she fell asleep. I think it is just going to take some time for her stomach to get use to nutrition.

One piece of good news today was they removed her IV. Now she has both hands again. Ruby's self soothing is rubbing her hands together and stroking her hands and arms. She was not happy the past 4 days that she could not get to that one hand!

So we seem to be doing trial and error with her GI system, in addition to the Upper GI test done today. Good to know about the nissen that does not work. We will just need to continue trial and error once home. The genetic testing will take a week or two to get all the results back. The metabolic testing will hopefully be back within the week!! The rule of thumb for failure to thrive kiddos is they want to see consistent weight gain on their own for three days. We are moving that right along with another chocolate chip cookie. I refuse to think that is what is upsetting her tummy. Must be the healthy milk!!

Tomorrow should be a more relaxing day. She truly deserves it!!