More mysteries

The EEG is done. Results: inconclusive. They didn’t see any real signs of seizure activity, but the neurologist had a hard time reading the report. Evidently Sam’s cardiac electricity is so strong it was overwriting his brain’s electric waves. I don’t understand that really, but from what I understand, the EEG picked up both waves and the cardiac ones were on top of the brains, making it difficult to read. Sam’s doctor said this is rare but does happen. At least he’s not having seizures.

Sam’s doctor also said that his pulmonary hypertension is sort of a misnomer, that he doesn’t have the classic case. Mostly what we’re dealing with is the stenosis of his veins. Having his oxygen so high makes things worse. But for a while it had to be that high else his blood oxygenation would drop into the teens-twenties. What they’ve done now is start a drip of versed to keep him calm. Because as long as he stays calm, his saturations are fine.

He spent almost a solid day at 100% oxygen. When I visited he was wide awake, more alert than I’ve seen him recently. He looked like my Sam. What I could see in his eyes, my Sam was there, he seemed to tell me he’ll be fine. I gave him another massage and just spent time holding his hands. Before I left they were able to wean the oxygen down to 75. On our recent phone call to check in, he was down to 40. The pressure is still even higher than its ever been at 25.

Has all this been just a blip on the radar? Is something more serious happening? What concerns me is how difficult it’s proving to be to get him off the vent. They warned us, but I didn’t believe it. In addition to vent weaning, we’ll eventually have to wean him off all these pain medications. Will his body remember the morphine if at one point in his adult life he decides to experiment? Will he be at greater risk of becoming an addict because his body will remember?

We were just starting to make preemie steps….feeds resuming, vent weaning. Two steps forward, oh, 10 steps back.

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6 thoughts on “More mysteries

  1. Is the trouble weaning him off the vent surgery related? Like is it just too hard for him to heal AND breathe on his own right now because it was difficult intestinal surgery, no matter how successful? Are feeds still resumed?

    • No, not surgery related at all. At least they haven’t said so. Feeds were stopped on Thursday because of all this other stuff, but they’ll hopefully resume tomorrow.

  2. Cheryl says:

    I’m so sorry you’re having such a hard time weaning him off the vent. I will continue to pray Sam makes baby steps to getting better and hopefully the doctors can give you some answer that put you at ease. Please continue to stay strong and have faith.

  3. Rebecca from FF says:

    Praying for Sam each and every day. He couldn’t have more amazing and strong parents. Praying his breakthrough moment is right around the corner.

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