If I Only Had a Heart

Hope’s resting up for her big day tomorrow. Mom & Dad dressed her up as the Tin Man for pre-Halloween pictures, since the day of Halloween she’ll be a little immobile due to her post-op jewelry (chest tubes, arterial lines, etc). So we figured better a little early than miss the Tin Man altogether! Dad […]

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Unicorns Rule

In honor of Hope’s uni-ventricular cardiac plumbing we dressed her up as a unicorn to celebrate her 3 month birthday!! It’s a big mark because, until transplant came along as an alternative path, all we used to think of was just getting her to that 3 months and 5 kilos mark. Which reminds me – […]

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The Trouble With The Curve

As always, Hope likes to throw curveballs to…well everyone. I honestly think she may have become a favorite among the team here because there’s nothing a doctor doesn’t like more than a challenge and this girl is a challenge for sure. For perspective, Hope has had probably close to 2 dozen echoes if you count […]

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Electric Avenue

So Mom & Dad thought they were all set for a quiet night and Hope laughed. We started the evening out needing to re-tape her breathing tube, but with a new approach. Normally, they paralyze her with Roc (rocuronium) after her first few doses of sedation, but before they start taping her. It is typically […]

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Whadda Day!

Late yesterday afternoon we found out Hope would need to start undergoing a process called Plasmapheresis between now and transplant. When she was listed for transplant she had a PRA to assess her level of antibodies of interest that are known to cause problems with transplant and/or rejection. At the time she had one antibody […]

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In Search of Zen

Hope had a pretty calm weekend. She continued her course of antibiotics because they confirmed infection – a double infection! She has a respiratory infection and an ear infection. However, they have chosen to leave her as active on the list because she is not symptomatic of a respiratory infection. Counting our blessings there! She […]

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Hope Can’t Shake The Cooties!

I’m running out of punny comparisons for recurring similar situations so I went straight for the toddler humor. This week has had two general themes on repeat: pissing Hope off and Hope running fevers. On Tuesday, everyone decided to piss Hope off. It started with X-ray at 4 am, which Hope hates. Sidebar – Mom […]

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