May 4th Update
• Upped his feeding amounts, he's tolerating it very well. Bowel sounds were good, just waiting on a poop! They'll continue to up it every day unless something there changes.
• Decreased ventilator settings, at 27% oxygen. His numbers showed him breathing above it at 1 am which is what they want so they can keep decreasing and get him off of it. Expansion of his lung is great, all other numbers as well so they think they'll be able to keep working down this week.
• PH labs looked good, numbers are trending down. Slowly but still down.
• Blood pressure is on the lower end of normal, ok but they are keeping him on the hydrocortisone - they were able to wean that a little..will stay the same today.
• He is off fentanyl!! Switched him to morphine to give as needed but seems to be doing ok. Should be moving more once that's out of his system.
• His fast breathing is normal for babies in general..and even more so for preemies. They don't regulate it like adults, he was in the beginning being on the oscillator and they also gave him large doses of caffeine to stimulate his brain and not have the breathing so sporadic, but he is off that now so his breathing will be fast and not consistent - its a good thing!!
• They reached out to the PH team to see if they would want to scope his airway, and PH doesn't think it's necessary. He's intubated now and the settings are so low they don't feel there's an issue. His nurses (Kevin and I also) are a little nervous about it yet (if he's on his right side he has a hard time breathing...they think there's either an obstruction in that right airway or its just hitting the end as its not developed with missing the right lung..he can only lay on his back or left side..shouldnt be an issue if thats the case when the vent is removed but thats what we're worried about) so his head nurse is going to reach out to ENT next and see what their take is on it.
• Im not sure who I told yesterday but nuerology came in and did a head scan..his vents are normal and they see no evidence of brain bleeds or damage.
• Also yesterday I spoke with the neonatologist and she is beyond impressed with where he is compared to how bad he was coming in. She was almost baffled I think and couldn't say enough good things. Obviously we're far from in the clear but she said she's so happy with how quickly he's responding to everything, and thinks most of the issue lies with him being premature and not his anatomy.
• And the last from yesterday is I spoke with 3 doctors from cardiology - the first was during his echo who said the enlargement of the right side of his heart seems to have improved. Then later 2 others came to go over his EKG results..there's 2 numbers they watch that should be the same and he does really well the one day and is off the next, they're thinking just another effect from the PH but that's why they decided to up the remodulin yesterday. There also has been a question of if he is missing one of the veins going back to his heart from his lung..and he is. His heart and lung can function with just the one but they're going to monitor it as its on the smaller side and the pressure can cause damage to it. Another reason to up the Remodulin. Besides that the anatomy of his heart and function is all good - no other defects (he has a small hole and she erased it from the board..we don't worry about that it'll close or it won't she says lol)..so if it can hold out with the PH he's good there.
• They are calling it persistent pulmonary hypertension at this point, so that kind of stinks but it's not a suprise. The fact that its getting better is still good even tho its not under control yet..so hopefully the remodulin can keep doing its thing.
• They have no labs/scans anything really planned for today so it'll be a nice chill day for him to just do his thing!
• PH labs looked good, numbers are trending down. Slowly but still down.
• Blood pressure is on the lower end of normal, ok but they are keeping him on the hydrocortisone - they were able to wean that a little..will stay the same today.
• He is off fentanyl!! Switched him to morphine to give as needed but seems to be doing ok. Should be moving more once that's out of his system.
• His fast breathing is normal for babies in general..and even more so for preemies. They don't regulate it like adults, he was in the beginning being on the oscillator and they also gave him large doses of caffeine to stimulate his brain and not have the breathing so sporadic, but he is off that now so his breathing will be fast and not consistent - its a good thing!!
• They reached out to the PH team to see if they would want to scope his airway, and PH doesn't think it's necessary. He's intubated now and the settings are so low they don't feel there's an issue. His nurses (Kevin and I also) are a little nervous about it yet (if he's on his right side he has a hard time breathing...they think there's either an obstruction in that right airway or its just hitting the end as its not developed with missing the right lung..he can only lay on his back or left side..shouldnt be an issue if thats the case when the vent is removed but thats what we're worried about) so his head nurse is going to reach out to ENT next and see what their take is on it.
• Im not sure who I told yesterday but nuerology came in and did a head scan..his vents are normal and they see no evidence of brain bleeds or damage.
• Also yesterday I spoke with the neonatologist and she is beyond impressed with where he is compared to how bad he was coming in. She was almost baffled I think and couldn't say enough good things. Obviously we're far from in the clear but she said she's so happy with how quickly he's responding to everything, and thinks most of the issue lies with him being premature and not his anatomy.
• And the last from yesterday is I spoke with 3 doctors from cardiology - the first was during his echo who said the enlargement of the right side of his heart seems to have improved. Then later 2 others came to go over his EKG results..there's 2 numbers they watch that should be the same and he does really well the one day and is off the next, they're thinking just another effect from the PH but that's why they decided to up the remodulin yesterday. There also has been a question of if he is missing one of the veins going back to his heart from his lung..and he is. His heart and lung can function with just the one but they're going to monitor it as its on the smaller side and the pressure can cause damage to it. Another reason to up the Remodulin. Besides that the anatomy of his heart and function is all good - no other defects (he has a small hole and she erased it from the board..we don't worry about that it'll close or it won't she says lol)..so if it can hold out with the PH he's good there.
• They are calling it persistent pulmonary hypertension at this point, so that kind of stinks but it's not a suprise. The fact that its getting better is still good even tho its not under control yet..so hopefully the remodulin can keep doing its thing.
• They have no labs/scans anything really planned for today so it'll be a nice chill day for him to just do his thing!