12.22


 today was a slow day.  we had high hopes the night before to wean him off the ventilator (his breathing machine) so we were slightly disappointed when he didn't tolerate it. my husband keeps reminding me that we need to cautiously optimistic.  i can not get sad or anxious when we dosen't respond immediately to weaning. however, they did wean and finally discontinue the nitric oxide they had flowing through his ventilator. the nitric oxide helps with his pulmonary hypertension. this unfortunately was created as a result of compensating for his poor heart. pulmonary hypertension is a high blood pressure in the arteries of the lung which as a result make the heart work harder. as a result the right side of the his heart has become enlarged. his enlarged heart on his chest x-ray is what gave the ED a red flag that he was not in there for an infection but for a cardiac issue.

good news is that on friday 8.21 he got a nasogastric (NG) feeding tube placed.  he started getting breast milk through it at a very small rate continuously (3cc/hr).  last night they increased it to 9cc/hr. this gives me peace. my poor baby just was not eating days before his diagnosis. he now has a fixed heart and my little man is getting the nutrition from his mama that he needs!

also by late last night they finally weaned him of of his epinephrine drip. this is a medication that was used to control his blood pressures and heart rate after surgery. praise the lord one less medication (heart medication!)

however, we did need to increase his lasix drip (a diuretic...aka a medication to make you pee). after 12 hours the increase in lasix still did not have the desired result so they started him on another diuretic iv push medication. we need the diuretics to work to help get all the fluid off of his lungs. he also has pulmonary edema (abnormal fluid build up in the air sacs of the lungs) which was caused by his heart defect.

as i look back today was a healing day. slow and steady ty and we will get there!

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