Friday, June 13th

Kevin and I decided that today would be as good as any day to try and get caught up on some sleep since Kinley is still on ECMO and will be for at least a few more days. We arrived at Kinley's baby station around 11:05 am. Kinley had a new nurse today, Brian, along with Linda, who she has had before. (I know, it seems like Kinley should have met all of the nurses by now, but not everyone can be lucky enough to take care of Kinley.) Brian and Linda informed us that Kinley had a pretty quiet night, but she did require a lot of PRN meds (PRN means extra doses) overnight because she started waking up and being fussy. She got 4 doses each of morphine and versed plus an extra couple doses of fentanyl. Fentanyl is another type of pain med. Since Kinley seems to be building up a tolerance for her morphine and versed drips, Dr. O increased them overnight. Now Kinley will be receiving morphine at a rate of 140 and versed at a rate of 130 from her IV drips. Another med change that was made overnight was to give Kinley her blood pressure med every 6 hours and not just when her BP reaches the upper limit. This way it is a little more proactive and hopefully we can prevent her BP from reaching the higher limits. Kinley's oxygen challenge this morning was only in the 60's, but remember, switching out the ECMO pumps usually sets the baby back a few days, so the low score this morning was not a huge surprise. Kinley is still getting pulmozyme every 12 hours and her IPV treatments every 6 hours. Her x-rays do not show significant changes in her lung, but Kevin and I feel like the treatments are working since we can see Kinley coughing and bringing up mucus during the treatments. Kinley's urine output remains good and was 8.7 overnight which is great.

Around 12:20 pm Brian called a music therapist for Kinley. Later on today she should be getting her very own IPOD to use at the hospital. The IPOD will play lullabies for Kinley to see if that helps her relax at all. Brian also noticed that Kinley was sucking on the tubes in her mouth sort of like a binkie, so he cut a real binkie to fit around the tubes. Kinley will need some practice on how to use the binkie because she just kept spitting it out.

Dr. M and Dr. W came by around 1:30 pm to round on Kinley. Basically the plan has not changed from yesterday. We are just going to sit back and continue the pulmozyme and IPV treatments over the weekend and re-evaluate on Monday. They did make some slight changes to Kinley's vent settings to see if they could allow Kinley to rest her lungs a little more over the weekend and also help her lower her CO2 a little more. One bit of disappointing news was that Dr. M does not think that Kinley is stable enough, even on ECMO, to have surgery at this point. We will still re-evaluate on Monday, but if Kinley's status is not changed, she may not even have her diaphragm repair surgery next week. Lets hope there is some improvement after letting Kinley rest over the weekend.

Around 4:15 pm there were a couple little hiccups with Kinley's care. First off, one of the tubes that goes in through Kinley's belly button. The tube is used to monitor her BP and is also used to draw blood from. The tube got a kink in it when Kinley was getting some labs drawn and has been leaking blood ever since. An IV team came to look at the leak to see if they could just repair it. Luckily they were able to repair the leak and the tube, as well as Kinley, are doing just fine now. The reason this could have been a problem is because Kinley is now too old to put another line in her belly button and it is not ideal to have to put another line in somewhere else since Kinley is still on heparin (a blood thinner). Secondly, Kevin and I noticed some blood oozing around the site where Kinley's ECMO tubes are inserted in her neck. Dr. M stated that this is to be expected since the IPV treatments shake Kinley some. She did not seem too concerned and we will just continue to watch that area a little more closely.

At 4:30 pm Kinley's IPOD is hooked up. Hopefully she will like the lullabies.

Kevin and I are still staying at the Hyatt across the street, so we decided to stay through shift change again. When we returned Carrie and Kathy were taking good care of Kinley. We stayed until 11:00 pm and then decided to head to our room for some rest since we knew Kinley was in good hands.