Wednesday, June 4th - The Gauntlet Has Been Thrown Down

Hi everybody...this is Kathy. I thought I would give Kevin a little break from blogging so that he could spend some more time with his daughter.

We finally got an early start to our day today and arrived at Children's Mercy at 8:30 am. We made a point to make sure and get here early since Kinley is having her heart echo today. When we arrived, Dot and Megan, Kinley's nurses for today, had already begun turning down the flow of the ECMO machine to prep for the test. We received an update of last night's events for Kinley, but basically she just slept, so not much to tell there. She did get one round of morphine and versed, but that was about it. We like those kind of updates.

This morning Kinley's oxygen challenge was 350, so that was great. Above 300 is where it should be to start thinking about weaning off ECMO. Her chest x-ray was not quite as good as yesterday, but that is still not a huge issue since she is still just resting her lungs.

By 8:45 am Kinley's ECMO flow is down to 0.05 and the oxygen setting on her ventilator has been turned up from 30% to 60%.

At 9:00 am the portable ultrasound machine and its technician had arrived and Kinley's heart echo test had begun. The test did not take long and we found out that the blood pressure in Kinley's right ventricle was 47. This is good news because Kinley's arterial blood pressure has been a good amount over 47 since she was put on ECMO. This means that her lungs are now the low pressure in her body and the blood should be flowing freely back to her lungs. Continuing with good news, Kinley was able to keep her O2 saturation percentage in the high 90s, all by herself during the entire test. During this time they also took some blood to do a blood gas test.

Immediately after Kinley's heart echo test was complete (9:15 am) a second ultrasound machine was brought in to give her a head ultrasound. During her head ultrasound, Kinley's oxygen settings on her vent were moved back down to 30% and they also increased her pressure to help open up her lungs. Also, her ECMO flow was turned up to 0.31. (FYI - Kinley was at 0.34 before her heart echo test) The results of Kinley's blood gas test, from when they were doing her heart echo, came back and they looked good considering Kinley was doing all of her oxygenation.

After the room had calmed down, Dr. P and Dr. W discussed with us a possible plan for Kinley, ECMO and surgery to fix her diaphragm. Best case scenario they are thinking to test Kinley tomorrow and see if she can come off of ECMO. If she can come off of ECMO, they are hoping for surgery on Friday to repair her diaphragm.

Right before noon Kinley receives some platelets and we decide to head down to the cafeteria for lunch. While we are gone she decided to get a little fussy during her vitals check by Megan. This is simply a hands on analysis of Kinley which happens every 2 to 4 hours. To help calm her down they gave her an extra round of morphine and versed. Kinley also received a dose of lasix to help with her swelling.

Kinley was very, very upset about her wet diaper at 2:30pm. It was her heaviest wet diaper to date at 182 cc. During her fit she turned her entire body red and put her BP to the roof. As soon as her diaper was changed her BP started to drop. After Kinley was calm again she decided to stay awake for about half an hour, simply looking around at everything, but not getting fussy. She ended up falling asleep around 3:10 pm.


Kinley extremely upset about her wet diaper


Kinley calmed down with her eyes open.

It's story time, Kevin sat down and read "Hello, Willie!" to Kinley.



The Gauntlet Has Been Thrown Down
Dr. W came back to talk with both of us about Kinley's upcoming schedule. The plan is to see if Kinley is ready to come off of ECMO tomorrow. That will mean turning off the O2 input on her ECMO machine and seeing if Kinley can handle oxygenating her own blood. If she can oxygenate her own blood, they will leave the O2 off of her ECMO machine and call the surgeons to remove the tubes from her neck. After she is off of ECMO, they will try to schedule her diaphragm repair surgery for Friday. If they cannot get her into surgery on Friday, we will all have to wait until Monday or Tuesday of next week for surgery because they do not schedule surgeries for the weekend. Coming off of ECMO is a big decision because once Kinley is off, she cannot go back on if she runs into any issues.

We decided to take off earlier than normal to get some rest and make sure that we are back bright and early for when they turn off the O2 on Kinley's ECMO. Sleep tight baby girl.