We all know that Kinley has not had an easy road so far, but today (June 7th) she gave us our biggest scare yet. Around 6:15 pm Kinley's BP began to rise to its highest levels ever. (To be honest, at one point she had the same BP as her mother.) What was so concerning to all of us was that Kinley was sleeping quietly and looked peaceful during all of this. Normally when Kinley's BP goes up she is either fussy or has a wet diaper. Dr. S informed us that this high BP could be a sign that she has a bleed in her brain so he ordered a head ultrasound for Kinley. He also ordered a dose of hydralazine (a medication to help lower BP) for Kinley. Dr. S said that he could not see any outward signs that she has a brain bleed, but with this high of BP he wanted to be sure. Unfortunately the ultrasound techs are "on call" on the weekends and Dr. S was thinking that it would be at least an hour before they arrive. That news put our stress on the same level as Kinley's BP. Luckily, for our health and sanity, there was an ultrasound tech already at the hospital and she arrived at Kinley's bedside around 6:50 pm. Going back to unfortunate for us, it was almost shift change and we had to leave Kinley's side. We sat in the lobby of the NICU, thinking thoughts that no parent wants to think, until Dr. S came out to find us. It was probably 7:10 pm when Dr. S came to talk to us. He told us that neither he nor the ultrasound technician could see a brain bleed, but they will still send the test off to get a final analysis by the radiologist. Needless to say, Kathy and I were almost crying tears of joy from hearing that Kinley does not have a brain bleed. After Dr. S headed back in to the NICU we decided to head down to the cafeteria for some celebratory ice cream.
After the shift change, and our ice cream, we returned to find Kinley resting with a BP rate much lower than when we left her.
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3 comments:
My thoughts and prayers are with you and your family. Kinley sounds like a fighter, she also sounds like she has her own schedule and will let you know when she is ready.
I am a friend of the Millers and I wish you the best.
My prayers are with you at this time.
Janet
These girls sure do like to keep us on our toes don't they? I just thought I would share something - Sofia's B/P runs high. They'll take it when she's in a deep sleep and it runs usually mid to upper 90's over 50's or 60's. When she's awake it's usually mid 120's over 70's or 80's. Her last echo showed a RV pressure upper 30's. Her pediatrician told us she likely still has just a little bit of pulmonary HTN, and so her systemic B/P runs high to compensate. Her pressure was also higher when the flow was higher on ECMO. I know it's so hard to sit and wait. I got really antsy for Sofia to come off ECMO, but it's better not to rush to make sure she's really ready. Lots of prayers for you all - hang in there!! You'll get through this!
The Millers
Lots of prayers and support from the 2300+ CDH families at CHERUBS coming your way! If you need information, support, have questions, need a shoulder or an ear... we are all here for you!
Dawn
CHERUBS - http://www.cdhsupport.org
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