The Waiting Game

We have settled into a typical hospital routine of waiting. The last major change made for Henry came overnight on Wednesday, when they slightly increased his enalapril (from .50 to .55 mg). Since then the doctors have been watching his numbers - his oxygen saturation and blood pressure - to be sure that his heart is sending an appropriate amount of blood to his lungs and his body.

[A medical aside, to the best of my understanding: the enalapril is medication to lower his blood pressure. The pressure in the arteries going to the lungs is much less than that in the arteries going out to the rest of the body. For HLHS kids, they monitor the SpO2, and if it gets too high (in the 90s, which would be expected for healthy hearts), then there is too much blood going to the lungs. To correct this, they increase the enalapril. When they do this, however, they must make sure his blood pressure, the diastolic in particular, does not get too low. Henry's BP has been good for him, registering around 75/40 (normal for a two week-old would be about 78/50). If his diastolic BP were to drop to about 30 or below, he might begin having other issues, e.g. with digestion. After the Norwood, they typically start kids Henry's size at .30 mg and do not like to go over .75 mg, so there is plenty of room to work, if necessary.]

 

 

Over the past couple of days, Henry's numbers have been great. His breathing rate is coming down and his SpO2 appears to be holding in the mid- to upper-80s. His feedings have been going great. He is still receiving 54 ml of milk through the feeding tube every three hours. By the end of the weekend, he should be getting this over in 30-minute periods, eight times a day. Through all of the feedings, he has not thrown up once and his "digestion" appears to be very good. He has also been doing some great practicing on his pacifier!

The occupational therapist was not able to make it by on Friday, unfortunately, so we are still waiting to try some swallowing. Henry should see the OT on Monday, and we have been told that is the last approval we need before moving up to the transitional/recovery floor. Assuming that goes well, we will be one more (big) step closer to home by Monday night!