Ramona Mae

Let’s please extend our prayers to my friends Lisa and Wes. Word reached me today that their dear daughter, Willow Faith, was born still on Sunday at full term. I can only imagine their grief. Please pray for both of them, their small son Caleb and for their sweet girl.

I called this morning and spoke with Ramona’s nurse. She gave me the scoop as usual and I let her know I’d be coming in for rounds. Right before we hung up she said “Yeah, she’s been on Rumaire all night and is in the high 80’s, see you when you get here, bye”.

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Ramona was extubated a few moments ago, cried her raspy two-pack-a-day cry and fell asleep. She’s now sucking on her paci and snoozing. It’s lovely to see her sweet face again, and to look into her eyes. She’s still pretty drugged up but is otherwise doing well. Her sats are in the low 90’s on 3 liters of nasal canula. We are hoping they are able to wean this off and still keep her above her baseline of 80.

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It’s a bummer to be spending Father’s Day in the PICU. The tubes I had in mind for this day were bratwurst.

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Just spoke to the nurse. The fever continues, she says it is “more concerning”, but she did not seem overly alarmed. They plan to extubate her today after rounds if everything goes well this morning.

The doctors have hinted to us this time around that Ramona will likely require 5-7 open heart surgeries in her lifetime. So, for the first few years of her life, she may have open heart suregry as often as you or I go to the dentist.

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Just a quick note to say that Ramona has come down with a fever. They have sent out cultures but it is hopefully nothing.

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The internet at the hospital is not playing nice today. So sorry for the delayed update. Here is the latest scoop: (more…)

I’m here in Ramona’s room and she’s got a lot of other guests, too.

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I just got a call from Jane with this update. The surgeons were able to go in and repair the aneurism with a gortex patch. They made the decision not to attempt the shunt on her RPA (Right Pulmonary Artery). Instead they have sliced open the LPA which is the smaller of the two. That is now patched open to encourage the other artery to grow. This is more helpful than the shunt on the Right would have been. (more…)