Seattle Children's Hospital Week 3

I can't believe we've been in Seattle for 3 weeks now! On Monday we had the "off-milrinone for a week" echocardiogram and his RV pressures were up. See a detailed report of the results in my last post: Seattle Off-Milrinone Echocardiogram Results. Because his RV pressures were up the doctor wanted to keep the PICC line in just in case Ethan needed to go back on Milrinone. Discharge was postponed from Friday to Saturday. The doctor reduced his coreg dose to give flexibility with his low blood pressures and started BiDil to address the higher RV pressures. We stopped Erythromycin (GI medication) because he has a GJ tube and erythromycin interacts with his other medications negatively.

Ethan started throwing up again. He threw up one morning before his meds and then threw up that evening after his meds. We have to give meds really slowly through his G-tube and he still gags. It looks like the 14 medications he gets in the morning is a little much for a stomach that doesn't get anything but meds 3 times a day. His food goes through the J tube into his intestine and bypasses the stomach. I would probably throw up too if all I got was medications into my stomach! We got a wedge from PT/OT to address his gerd but we'll have to be really careful with administering his meds so he doesn't throw them all up.

He got his helmet to help shape his head since the right side of his head is pretty flat. Ethan qualifies for a helmet because the difference between the diagonals of his head is 14mm. Normal range is from 0-6mm, mild asymmetry is between 6-10mm, moderate is between 10-16mm, and severe is 16mm and above. They like to do helmets in the moderate range and surgery in the severe range so Ethan qualifies for a helmet. The best time to do a helmet is when the head is still growing between 6-10 months. The orthotics people like to do a helmet fitting out patient but I didn't want to miss the window of opportunity since Ethan is 9 months old. We did an inpatient fitting 10 days prior and just got the helmet on Wednesday. He is expected to wear it 23 hours a day for 4-6months. The problem is that Ethan's biPap mask doesn't fit when he has the helmet on. He is supposed to wear the helmet overnight but he can't. His breathing comes first and then head shaping so we're still not sure what we are going to do. For now, he wears the helmet as much as he can during the day and we take it off at night for biPap. We have a sleep study in a week so hopefully they have a few tricks up their sleeve to fix the issue.

Ethan had a follow up hearing test from his first hospitalization. He was on lasix for 4 months and that can cause hearing loss so the test was just to test his hearing. We tried to do the hearing test at Legacy a few months ago but their equipment didn't work and they told us to come back when he was 9 months old. Well who knew we would be in Seattle Children's hospital at 9 months so we did the test here. He passed. Ethan is on Lasix again so I'm not sure what that means - probably another hearing test in the future after we finish this round of lasix.

We were talking about discharge on Saturday but on Friday I noticed Ethan's work of breathing had increased. He had greater retractions and his respiratory rate had increased. We did an echocardiogram to see if we could remove the PICC line and discharge. His echo looked the same as Monday's echo so from a cardiac standpoint he is stable but because of his increased work of breathing we decided to postpone discharge again, keep the PICC in, and try to figure out what was wrong.

We don't know why Ethan started breathing harder. We did a chest x-ray to see if there was any fluid building up in the lungs. His x-ray looked clear, his echocardiogram looked stable, his labs looked good. No one knew why he started retracting and breathing faster. The doctor increased his lasix to help remove fluid and help the left side of the heart. He also increased the BiDil since we were still in the hospital. The plan is to do another echo tomorrow, remove the PICC and be discharged tomorrow. I guess we will see how things are in the morning!

We've had a lot of fun in the sun this week. It has been wonderful weather in the 70s and we have permission to go outside for a half hour off monitors to enjoy the sun. Ethan likes it. He loves to pull the leaves and pedals off the plants in the rooftop gardens. He also likes to play in the dirt. It's fun seeing him do "boy" things. :) I can't wait to take him home!

A few other observations from this week. Ethan doesn't eat baby food anymore. He won't even take a bite. He'll eat a few puffs but then he starts hitting them instead of eating them. With his new helmet Ethan likes to hit his head on the crib rails. It usually ends up in him getting upset though. Ethan has also figured out how to throw toys over the crib rails on purpose. He is one smart cookie. I've also noticed that Ethan tends to wake up around 12:30 every night but I just realized it's probably because of vital checks... another reason I can't wait to get out of the hospital. :) Ethan has been sleeping in until 9am most mornings. He doesn't really take a morning nap and will get about 2 naps in before bed in the afternoon/early evening.

New helmet!

He is so cute in his helmet! I love the color. It goes so well with his blue eyes. 

Ethan's latest obsession! He loves to eat his toes!!