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Feeling everything
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Little warrior is 7 months and a week; he has pretty bad chronic lung disease that has caused pulmonary hypertension. He has been transferred twice. The first time it was because where he was born did not have a pediatric surgery ward so he was shipped to a bigger hospital to have his hernia repaired and a gtube placed. The neonatalogists even suggested a fundo which we were okay with, but the surgeon said it did not look like it was needed and with his chronic lungs didn’t want to have him under longer than needed. Afterwards, he was doing okay for a few weeks until his oxygen level requirement kept climbing. The pulmonary hypertension required him to be transferred to the largest hospital in the city that thankfully has the specialist that see cases like this more often. They found that he also had pneumonia which was most probably caused by micro aspirations from reflux. They say once he’s more stable that a fundo will be needed and also a trach; however, we have been here two weeks and the doctor told us that today that he’s not getting worst, but that he is stuck. She said we would likely be here months before we saw him be back to his normal self. It’s hard to hear this because we have already been in the NICU for 7 months and hearing that it’ll be more months just is so hard. I really wish that the surgeon had done the fundo and maybe he wouldn’t have caught pneumonia and have such bad pulmonary hypertension.

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2 years ago