Tuesday, August 5th - First Talk of Going Home

When I arrived at Kinley's bed this morning Rachel, Kinley's nurse for today, and Delores (NNP) were looking at Kinley. Rachel told me that Kinley had just thrown up the first 10ccs of her 8 am bottle and that she was going to give the rest of the bottle through her NG tube along with the 55 ccs that she gets through the NG anyway. We discussed possible reasons for Kinley's increased amounts of throw up and basically threw out all sorts of ideas from reflux to withdrawal symptoms, gas pains and everything in between, but basically we just don't know what is causing her problems. Delores thinks that Kinley has been fussy because of the pain associated with reflux, so she ordered some Tylenol for Kinley, but it did not seem to touch her. This didn't really surprise me because no medication really touches Kinley in normal doses. She needed really high doses of her pain meds while on ECMO. Delores also suggested some sugar water to dip Kinley's binky in. The sugar water helped for a little while to calm her down.

After the initial 10 cc vomit this morning, Kinley was able to keep the rest of her 8 am feed down. Kinley did get fussy towards the end of her feeding, but we found that warm blankets over her stomach, laying her on her right side and patting her back/butt made her feel a little better and she actually slept for a little while in this position.

During rounds today there was one change made that I was really happy about. We are going to increase her erythromycin dose. Kinley has been getting erythromycin to help with her gut motility. A while back, Kinley was having so many poopy diapers that we decreased her erythromycin dose, but maybe we decreased it too much. She is not having nearly as many poopy diapers, but her residuals have been higher, which means things are not moving through her system very well. It will take some work, but we need to find a happy medium between an excess of poopy diapers and high residuals. One other thing that came up during rounds today was the possibility of Kinley going HOME!! This was actually bitter sweet news. Dr. P said that Kinley will most likely not be eating full feeds from the bottle any time soon, so we will most likely be going home on tube feeds. This means that Kevin and I will have to learn how to place Kinley's NG tube because it comes out some of the time when Kinley throws up. Seeing how much Kinley hates having her tube placed does not make Kevin or I very excited to have to be the ones to put it in, but we will do what we have to for Kinley to be healthy and at home. Dr. P said that Kinley can go home on her methadone, with a weaning schedule. It looks like for the time being we will just try to work out a feeding schedule that will work for Kinley while she is in the hospital and one she can go home on. We still need to have her gain weight consistently, and since she lost 100 grams last night, we are obviously not there yet.

Kinley was actually resting pretty well and had a 30 cc residual just before her 11 am feeding, so Delores said to just give her 90 cc feeding through her NG tube and run it in over 2 hours instead of 1 and 1/2 hours. This sounded like a little setback to me, but Delores just wants to give the increased erythromycin dose some time to work. It can take a day or so. We will just have to see how Kinley is doing before each feed today and go from there. Kinely sure likes to make sure and remind us every once in a while that she is running the show. Towards the end of the feed Kinley got pretty fussy again, but I used the warm blankets, laid her on her right side and patted her back again and it seemed to help a little.

Right before Kinley's 2:00 pm feeding (around 1:50 pm) she threw up at least 20 ccs. She had to have her clothes and her entire bedding changed. Once she was cleaned up and ready to go, she ate 40 ccs from her bottle. She is only supposed to be getting 35 ccs from her bottle, but Rachel put in an extra 5 ccs in case there was any excess drooling. To make sure Kinley was not swallowing too much air I burped her twice during the bottle and once afterwards. She had some really good burps each time. Definitely starting to think that we have not burped Kinley well enough in the past and that extra air was the cause for some of her discomfort. The remaining portion (60 ccs) of Kinley's feeding was given through her NG and she kept it all down. I even burped her randomly between feeds just to make sure she didn't have any excess air in her belly. She ended up sleeping a good portion of the time before her 5 pm feeding.

Kinley's 5:00 pm feeding went really well. She ate her entire bottle (35 ccs plus the extra 5) and got the rest through her NG tube. When I had to leave for shift change, Kinley had still kept all of her food down. We called in later that night, just to check up, and Laura told us that Kinley's 8:00 pm feeding was given entirely through her NG tube because she was asleep and that, as of 10:45 pm, Kinley had not thrown up.