Wednesday, August 13th - Kevin's 1st NG

Katie and Lacey are back to take care of Kinley today, yea! Katie let us know right away that we did not miss rounds, but already Kinley had a new order for her total feed to be 95 ccs, instead of just 90 ccs.

Nancy, from OT, is here when we arrive. She just finished feeding Kinley her 8 am bottle and got her to take 71 ccs, but Kinley was really, really fussy for it.

During rounds today it was decided to switch Kinley from nystatin to diflucan for her thrush in case the thrush is in her throat, in addition to being on her tongue. Also, the diflucan is a little stronger than nystatin and Dr. P really wants it taken care of before we go home. Dr. P also wrote an order to move Kinley's methadone dose to 0.4 mg starting tomorrow per Kinley's methadone weaning schudule.

Kinley's 11:00 am feeding was bit interesting. While I was feeding her she decided to poop in her diaper, so we stopped to change her. We ended up changing her diaper and her outfit because she had overfilled her diaper. When we got her back down to feed her she was fussy and I decided to try burping her on my shoulder. She ended up throwing up about 10 ccs all over her new outfit and the blanket she was laying on. I changed her outfit again, and when doing so noticed that she had a wet diaper, so I changed that again also. When we finally sat down again to try feeding, Kinley burped all on her own, ate 65ccs, then started coughing a little and spit up a couple more ccs of milk. Kinley likes to do things the difficult way.

At 1:00 pm Kathy and I took the required infant CPR class. Now we know what to do if Kinley would choke or stop breathing. Lets hope we never have to use our newly gained knowledge. Right after the CPR class we met with the Andrea, the discharge planner. She went over how we will get the supplies that we need to take care of Kinley at home with her feeding tube. Andrea also scheduled 3 doctors's appointments for Kinley, so she went over the dates and times of those appointments with us. Kinley will have one appointment with her new pediatritian, one appointment with OT at Children's Mercy, and one appointment with the surgery department so that they can check to see how Kinley's is healing from all her surgeries. The OT appointment at Children's Mercy Hospital is just to tide us over until we can get set-up with an occupational therapist that will come out to our house to work with Kinley. Finally, we received the written prescriptions for Kinley so that Kathy can take them to work and get them filled. Kinley will be going home on prilosec, erythromycin, and iron. She will also go home on methadone, but we will just fill that at Children's Mercy's pharmacy before we leave. (Hopefully we won't forget to pick that up. I am sure we will have plenty of other things on our mind when we actually do get to leave.) Depending on how Kinley's thrush is looking in a couple of days, she might go home on diflucan as well.

Later on in the afternoon Andrea came by Kinley's bedstation to fit Kinley in her car seat. Since Kinley is already about 2 months and 3 weeks old, Andrea had to raise the straps on Kinley's car seat and the head rest. She told us that she never had to do that before. Way to go Kinley! She is such a big girl! Her actual car seat test will most likely be tomorrow.

For Kinley's 2 pm feeding she ate 70 ccs and got the rest through her NG tube.

Speaking of Kinley's NG tube, I replaced it for the first time today. It went pretty well and I was able to place it the first time. Kinley did not think it was so great though, I can't blame her for that.

Kinley's feeding at 5 pm does not go very well. She only took about 45 ccs because she was so fussy. I am guessing that she was simply tired and hopefully later feedings will go better.