Day 36

An update:

H remains in critical condition and in the intensive care unit. The brain swelling hasn’t stopped. He is having cycles every 1-3 hours where his intracranial pressure – which they measure with the monitor that was surgically inserted into his skull – spikes up above 50. When this happens, his heart rate drops – sometimes as low as into the 30s, but generally into the 40s or low 50s. He is deeply sedated and on a respirator. They are trying a variety of medications and other interventions to try to stabilize the wild fluctuations in his intracranial pressure, plus his head is elevated pretty steeply to try to help protect his brain. They finally got a nasal feeding tube in yesterday afternoon, so he’s getting some nutrition now. This morning he is having seizure like activity where he is trembling. This is new. They have now upped the paralytic agent he’s been getting to see if they can stop the shaking. He looks worse to me this morning. His face is more swollen and his tongue is thrust forward in a way that it hasn’t been.

This is hard. My poor, sweet baby boy. It’s all so surreal. Even 36 days into this, I can’t quite believe it’s happening. You read and hear about this happening to other people, but truly, you just never imagine that it could happen to your child, your family


I want to say again how much H’s father, stepparents, younger siblings, and entire family appreciate every single message, email, blog comment, card and letter of support that nice folks have offered and continued to offer. I am so sorry that I am behind on responding directly to people, but please know how much it means to me to hear from folks. THANK YOU.

Oh, and one last thing – I simply cannot rave enough about the amazing care H is receiving at UT Medical Center. He has one-on-one nursing care here in the ICU and the level of attention and skill of his nurses are fantastic. I am also very pleased by the energy, attention and expertise that his neurologist and the neurosurgeons are putting into H’s care. Dr. R in particular (email me if you want to know his name so I can refer you if you are looking for a neurologist) is so thorough and attentive, and he’s really working hard to research H’s somewhat rare condition – the Delayed Post-Hypoxic Leukoencephelopathy. He’s also just plain nice; yesterday he saw how tiring it is for someone 8 months pregnant (that would be me) to be spending hours every day perched on a tiny plastic chair in H’s ICU unit, so he ordered up a comfortable recliner to be placed in here so that I can sit with my feet up when I am with H. That was just incredibly thoughtful of him.

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