Raising a Ventilator Dependent-Child with Congenital Scoliosis and Everything Beautiful in Between
Seven days to observe her then we go to the pulmonary pediatric floor. That means that if she does not desat or her oxygen sats does not drop below 85% for unexplained reasons, or if she desats and goes quickly back up, then it’s considered a good day for her. So we start counting!…
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Finally, Dana has been transitioned to a home vent called Trilogy. She was previously tried on the other called LTV but she unfortunately didn’t do well with it. This Trilogy, they say, is more suited for her because it gives her breaths the moments she breathes. We are going home with it. And it is…
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It has been a long journey. We are still here in the hospital. Feeding and weaning her off from the 2 sedation meds is the main reason why we are here still…the intensive unit, i mean. On the other hand, we have been enjoying her being awake lately. We have been enjoying her expessions…
Read MoreUpdate: Yesterday, Dana had a fever. No problems with her recent surgeries, trach and g-tube placement. She has had no breathing problems lately. But yesterday until today, she has fever, but she is more calm today. Her heart rate is still elevated though as high as 230 when agitated and…
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Update: She will be on tracheostomy tube and g-tube. We are thankful for all your prayers. We are thankful that God has kept baby Dana in his care. Her scoliosis has progressed as she is growing, and with this is her left lung being more restricted in doing it’s function. Next week she will be…
Read MoreCame back to Dana today from work. She has been doing well and they have been aggressively trying to wean her off everything. Today, they give her rest. They started her vent sprints 2 days ago..allowing her to breathe on her own (without the vent) for couple of minutes. She was doing okay…
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