We arrive back around 10:40 am. Phyllis and Linda are Kinley's nurses today. They update us on Kinley's activities while we were gone. Kinley had a quiet night. They gave her an extra round of morphine and versed earlier in the morning because she was moving around a lot. This extra movement can be an issue because it uses up her precious energy and also makes her heart and lungs work harder than they need to since she is on ECMO. We want those to rest up for when she comes off of ECMO. Both her morning chest x-ray and head ultrasound have been done, but no notices have been relayed to Kinley's nurses. We take this as a good sign that everything looked well. We notice that Kinley has some swelling around her head and hands due to lack of movement and extra fluids, but this is not a big concern right now because it is more important to keep Kinley still while she is on ECMO. Kinley's urine output is at 4 cc/kilo/hr.
At 12:20 pm, the doctors did their daily rounds. No big changes for Kinley. She is looking good and stable on ECMO and that is all we can ask for. Keep up the great work Kinley!
At 4:35 pm Kinley threw a MAJOR fit. If she didn't have her breathing tube in I swear she would have deafened someone. She would scrunch up her little face and let out the loudest silent scream she could. She also did a very impressive job of turning her whole body bright red. (I guess that means she has good circulation and is oxygenating her blood well.) During this fit Kinley sent her BP way up. We could not see that anything was wrong with her other than the fact that she had a wet diaper. Phyllis changed her diaper and Kinley settled down immediately. At least that is what we thought, Kinley looked calm and her heart rate and breathing were fine, but her BP was not coming back down. Phyllis gave Kinley an extra round of morphine and versed to help her stay calm and try to bring her BP down. By 5:25 pm her BP was back where we wanted it.
While talking with Phyllis and Linda we found out that sometime yesterday they had increased Kinley's morphine drip to 50 mcg/kg/hr from 40. This is because Kinley had been needing to many extra doses the past couple of days. It is good that Kinley is receiving all of the medications she requires, but Kathy and I do have some concerns about when Kinley will be weaned off her medications. She will very likely go through withdrawals, but we are hoping that they will not be too severe.
Kathy and I have been planning to go home during the shift change today since Kinley is looking so good and we haven't been home in over two days. Apparently Kinley does not like us to leave because around 6:15 pm Kinley "decided" to have an issue with her breathing tube. A respiratory therapist came by to evaluate her and is thinking that her tube may have slipped down a bit further in her throat. This would affect the pressure and air flow reaching her lungs. They have ordered a chest x-ray to help make a final diagnosis.
At 7:00 pm, the doctor listens to Kinley's chest and takes a look at the x-ray and says that it looks good, but they may make some minor adjustments. Since the doctor is not too concerned about her air tube, we decide to stick to our plans and head home during the shift change.
Sorry for the lack of pictures recently. Here are a few pics for you viewing enjoyment.
Kinley with her bears. The bear at Kinley's feet is a "Prayer Bear" given to her by one of the chaplains.
Kinley holding onto Dad's finger.
An earlier pic of Kinley with her eyes open.
1 comment:
Well the diaper fits are another thing she and Sofia have in common. Even when Sofia was heavily sedated, her blood pressure and heartrate would rise as soon as her diaper was wet. And even now, she lets us know ASAP when she needs changed. She is very particular about her pants! Maybe this will make potty training easy... ;-)
The Millers
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