Ramona Mae

Ramona has been re-admited to the hospital and is back up in the PICU. They are doing a new echocardiogram to determine if she is still getting good flow where they opened things up during her surgery on Valentine’s Day. If the test shows that what they did is holding and working as it has been then they will look into what is causing her distress. (Feeding schedule etc)
If the echo shows that Ramona is no longer getting adequate flow they will begin to talk about comfort measures for her and possible hospice care.
Either answer will be understandably very difficult for them. Please Pray for Jane and Andy as they wait to hear.

I just spoke with Jane very briefly and they have taken Ramona to the ER. Ramona’s oxygenation is back in the 40’s and 50’s and the doctors are trying stabilize her. This is more than Jane and Andy can take care of at home. Please pray that if she needs more care than they can provide her the doctors will not hesistate to take the burden off Jane and Andy.
Please pray for discernment for the Doctors and nurses who are with Ramona, and for strength for Jane and Andy.

We are now trying to determine if Ramona needs to be readmitted. She has vomited twice today her entire stomach contents and has been sleepless and sometimes inconsolable since we brought her home. Twice she has become so upset that she has had significant trouble breathing and has broken into a sweat, which can be a sign of heart failure.

Please pray we will be able to wisely discern when it might be time to make this important choice and that we’ll be be able to tell when we are no longer able to keep her safe at home.

On February 13th I brought my calm, smiling and, I thought, healthy baby to the emergency room to follow up on an ultrasound. Now the doctors have cut her open, stuck about a billion tubes in her, pumped her full of formula and returned to me a child I sometimes don’t even recognize.
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I’ve had a rough day today, so has Ramona. I guess I had it in my head that bringing Ramona home was going to be some kind of a Utopia. On the plus side, not driving back and forth is nice. On the minus side, everything else.
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Many of you are starting to get “ants in your pants” wondering and waiting for news. Ramona is home with Andy, Jane and Simon. While this is joyous news it is also a very difficult transition so keep up those prayers! More updates to come…