A Very Good Visit

Today has been a really good day. Kinley had an appointment at the Special Care Clinic at Children's Mercy Hospital this morning. Kevin and I had been a little worried about this appointment. The Special Care Clinic is always really conservative in treating Kinley and we thought they might not be so happy with some of the changes we have made to Kinley's care in the last couple of weeks. In addition to that, Kinley does not really eat well at her appointments and we were worried that would put her behind for today and result in having to do an NG tube feed tonight. We actually thought about canceling our appointment today, but ended up going and now we are glad we did.

I guess I should start out by saying that in addition to not doing NG tube feeds at night for the past 6 days we also stopped all her meds a couple of weeks ago. We got the OK from her pediatrician about a month ago to stop her iron, but she was supposed to also be on her Prilosec and erythromycin still. We stopped the erythromycin because she was stooling well and we wanted to see how she did without the med. We stopped her Prilosec because she put up a fuss when we tried to give it to her orally. She used to get it through her NG and it wasn't a problem, but if you are not familiar with Prilosec, it tastes like salt water. I tried to mask it by adding some grape flavor, but it was still really nasty. Much to our surprise Kinley did really well off the Prilosec. Her oral intake started to increase and she actually threw up and spit up less. As a mom and pharmacist I have no explanation for this reaction, but if Kinley is happy and doing well then I am happy. As for the erythromycin, we will be starting that back up today. She was able to keep up with stooling as long as she was getting her full 800+mls per day, but now that she is getting closer to 700+mls, she is having a harder time keeping up. We have been giving an ounce of prune juice with one bottle the last couple of days, but I think we just need to start the erythromycin again.

The Special Care Clinic had only good things to say about Kinley and her progress. Kinley weighed 15lbs and 15oz today, so they were happy with her weight gain. She is also keeping up with her growth curve nicely and her oxygen saturation was 100% when they checked it. Everyone said how good (and chubby) she looked. They said that we could keep doing what we have been doing, no NG, no meds and all! Kinley was all smiles after hearing her good report. In fact, Kinley's nurse practitioner, dietitian and OT said her progress was like an early Christmas present.

Kinley cooperated by eating a pretty large bottle of 145mls just before we left for Children's Mercy, so we figured if we were back home in 3 hours we would not have to worry about feeding Kinley while we were out. Kinley's Special Care Clinic appointment was fairly quick and painless since they were happy with her progress, so that meant that we had time to stop by the NICU to visit everyone up there. Kinley was able to see several of the people that took care of her while she was on ECMO and nurse Katie. It was so good to see everyone again, but I am glad that it was on an outpatient basis.

We did find out that since Kinley now weighs 15lbs and 15oz her minimum intake to maintain hydration is now 720mls. With how far Kinley has come in just the last week or so I know she is up to the challenge!