Hello everyone, sorry for the lack of blog posts in the past 24 hours. Lack of sleep combined with stress and worry has finally caught up with us. We had to leave Children's Mercy early yesterday to try and get caught up on sleep, and also to maintain our sanity.
At one point yesterday the oxygen settings on Kinley's vent was down to 23% (the air that we breathe is 21% oxygen) and she was keeping her oxygen saturation between 98 and 100%. Then Kinley began a long, slow decline with her oxygen settings. This did not help our current physical and emotional state. By the time that we had to leave (around 4:30 pm) the oxygen coming from her vent was 40% and her blood oxygen saturation was around 91%. Granted, this is not much of a setback, but it felt monstrous to us. To watch our baby girl slowly move in the wrong direction after making such positive steps since surgery and coming off of ECMO, and to be helpless to stop it, was almost too much for us to take.
We arrive back at Kinley's side a little after noon today. We notice immediately that Linda is back for a third day in a row with Kinley (Linda is such a trooper) and that Kinley's NO machine is gone. Also, the oxygen setting on Kinley's vent is down to 30% and her oxygen saturation percentage is in the mid 90s. Linda gets us caught up on everything we missed yesterday and this morning.
After we left yesterday, Kinley's morphine drip was lowered from 100 to 50 and her methadone dose was increased. Around 5:30 pm, Pablo returned to remove Kinley's abdominal drain. Once the abdominal drain tube was out Pablo put in two stitches to close the hole in Kinley's side. Kinley got a bit fussy during the procedure, but calmed down immediately after it was over. Around midnight Kinley's NO (nitrous oxide) machine was taken away. This is a big step in the right direction because it means that Kinley does not need any additional help keeping her pulmonary hypertension down. During rounds this morning Dr. K has decided to lower Kinley's morphine drip again. This time from 50 to 20. To help offset this drop Kinley's methadone dose will be increased again. Other then that it will be business as usual. Continue to watch Kinley's blood oxygen saturation and wean her vent settings when possible.
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4 comments:
K&K: Am glad you went home to recapture sleep/strength/time together...you've been thru loads.
Kinley is doing great...those are major strides to change those meds that fast/to give up a tube+machine...what are you doing with all that room!?
Kinley's oxygen sats sound great now!! Thinking & praying for you! LMS
Glad to hear you guys are taking care of yourselves too. It's great that Kinley's moving along at this pace and kicked the NO tank to the curb!
Keep it up Kinley!!!
The Jensen Family
Great news about getting rid of that NO! It's so good to hear Kinley is getting better by leaps and bounds. I haven't posted in a few days because I've been a little "out of it" after my foot surgery, but I've still been checking the blog every day. I loved the 1 month b-day pics. What a sweet and adorable little face! And Kinley looks SO much like her mommy - she's like a little "mini Kathy". Keep the good news coming!
The Millers
It's good to read Kinley's progress and that you were able to get some rest. My prayers are still with you.
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